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Medical Report by Medical Investigation Ltd

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Two medically qualified doctors, including a paediatrician, concluded in May 2001, that civil proceedings to the European Court of Human Rights and criminal investigations be conducted into the death of baby Sunaina Chaudhari in a UK hospital.  They condemned the actions of doctors and nurses for the "Do Not Resuscitate" and "withhold withdraw treatment" without the order of the High Court and against the parent's wishes. They condemned the care proceedings whilst the baby was detained in hospital against the parent's wishes, to stop parents removing the baby from hospital.




Patient Number KG6545

          DATE OF BIRTH             25.5.00

DATE DECEASED     26.10.00

    Address Ilford, London UK



1) Introduction  

2) Documents and lists of names involved 

3) Facts of the case               



1) Background

2) Facts about Trisomy 18

3) Ethical Considerations of Trisomy 18

4) Trisomy 18 Patients – Futile cases or not



1) Emergency Protection Order – justified or not

2) Basis for Emergency Protection Order

3) Medical Opinion on Emergency Protection Order

4) Further medical evidence

5) Conclusions

6) Medical and Factual Inaccuracies in the documents of the EPO



Personality Conflicts and Communication

Imputation of Psychiatric Illness



Confidentialiy and Consent Issues


1) Was the patient dying?

2) Withdrawal of treatment and Do not Resuscitate Orders

3) Cause of death



1) Other Concerns raised by the family

2) Conclusions

3) Recommendations



P.O. Box 8553, West Midlands, B86 2BS

Tel :








Patient Number KG6545


          DATE OF BIRTH             25.5.00

DATE DECEASED     26.10.00

    Address, Ilford, London UK






1. We have been asked to formulate an independent report regarding the circumstances of the death and medical treatment of Sunaina Chaudhari (deceased). This has been requested by Ms Sadhana Chaudhari and Rajesh Kumar Chawla, Ms Neelu Berry and their legal advisers. 


2. The aim of this report is to assist in the medical aspects of the case and elucidate issues which may be of legal significance.  Our report is an objective assessment using the comparator of “normal medical practice” in the United Kingdom.


3. We are an organisation which provides independent advice on a wide range of issues affecting individuals who have complaints against the NHS health service. As a team of doctors we either offer advice to resolve disputes quickly or provide independent advice on cases, both medical negligence and criminal in nature, for the police and individuals.


4. Our objective is to direct the individual to the achievement of natural justice.


5. We are a voluntary organisation. Our aim is to provide a fair and impartial view of  this case. We are dedicated in the pursuit of justice and thus have waivered any charge in compiling this report.  In addition, we hope to clarify the concerns raised by the family of the child. We have provided an objective opinion of the circumstances surrounding the care and death of the above patient. We have thus provided a truthful and honest account of clinical practice with comparisons made to national directives in the United Kingdom.


6. The current report has been formulated by UK medically trained doctors.  The main body of the case has been from Dr Rita Pal, BSc MBBS (Medical ,Pyschiatry Social and Legal aspects of the case) and Dr BR Pal, MBChB, MRCP(paed), FRCPCH  (Paediatric and Neonatal aspects of the case)


7. May we take this opportunity to convey our condolences for the death of their child under circumstances that no parent should have to endure in the United Kingdom.


We owe respect to the living - to the dead we owe only truth. Voltaire


8. The events have caused unnecessary distress to the parents and relatives at a time when their only living child was dependent on the social and health care providers of the NHS Trust. This has severe repercussions in causing mistrust, breach of human rights and may potentially lead to long term trauma induced by the direct actions of these institutions.


9.    We wish to state that no parent should be removed from their child in the last ten days of the child’s life by the force of the police and the authorities. This is contrary to the ethics stipulated in the medical and legal fields. 


10.   Article 24 of the Convention on the Rights of the Child states that:


States Parties recognise the right of the child to the enjoyment of the highest

attainable standard of health and to facilities for the treatment of illness and

rehabilitation of health. States Parties shall strive to ensure that no child is

deprived of his or her right of access to such


11. We shall endeavour to provide an evidence based report to verify the events of the case in medicine, ethics and law with particular note to the above.  This case is complex given that there have been multiple clinical and social teams involved.


12.   We have therefore considered a wide range of issues with respect to


a) Mismanagement by Social Services personnel

b) Mismanagement by King George Hospital personnel

c) Mismanagement by all clinical teams

d) Illegal obtaining of the Emergency Protection Order by Medical and Social Personnel

e) Abuse of General Management of the Parents/child

f) Abuse of Clinical care and Risk management of the Parents/child

g) Lack of Consent

h) Breach of Confidentiality

i) Wrongful imputation of a psychiatric illness


13.   We refer to a diverse range of current documentation which elucidate the present thinking of the “reasonable clinician”. The sources of our documents are from the leading authorities in our field, namely the British Medical Association, the General Medical Council and the Department of Health.


14.Provision of Documents

Documents relied upon

In preparation of our report, we relied on bundles of documents provided including:-


a) Medical Records for Sunaina Chaudhari (and Sadhana Chaudhari)

b) All documentation involved in obtaining the Emergency Protection Order

c) Redbridge Protocol For Emergency Protection Orders

d) Contemporaneous notes made by the family during admission

e) Sparse Social Services documentation

f) Post Mortem Reports by Professor Risdon and Venezis

g) Toxicology Reports

h) All letters written by the Family with respect to a complaint to Redbridge NHS Trust

i) Video Evidence of Sunaina Chaudhari elucidating her normal activities during the period when the “ Do not Resuscitate” order was given.

j) Substantial contact and questioning of the family to discern the facts of the case. We have been unable to question the authorities due to their constant refusal to answer our questions posed via the family. They have recently refused co-operate in our investigation.





Peter Murphy                  Chief Executive King George Hospital

Caroline Harrison             Trust Solicitor King Georges Hospital

Dr David Robinson             Consultant Paediatrician

Dr Anand Shirsalker     Consultant  Paediatrician

Sister Angela Judd            Sister on Clover ward

Judi Fox    Nurse provided to Sunaina during 26th October 2000

Anne Mahoney                  Paediatric Services Manager

Liz Pointing                        Director of Nursing

Dr Thomas Rager         Paediatric/Neonatal SHO

Dr Sanjay Sahi

Dr Solebo               Paediatric/Neonatal SHO

Dr Kathy Padua          SHO

Dr Naomi Hancox         SHO

Dr Rachel Windsor       Sen paed Registrar



Dr Mark Peters          GOSH NICU Consultant

Dr Andy Petros          GOSH NICU Consultant

Dr Mark Kenny           GOSH NICU Consultant

Prof Dinwiddy           Consultant Respiratory Physician



Paul Hemmingway   Director of Mental Health, and Head of Immediate Response Team (now called 24/7 team)

Denise Cahill           Locum systemic psychotherapist

Ileen Ashitey           Child Protection Nurse Specialist


KENWOOD GARDEN & HOME CARE TEAM (part of London Borough of Redbridge)

Barbara Holland         Manager Kenwood Garden

Dr Sarah Luke           Consultant Paediatrician

Maria Ingham            Health Visitor

Pam Hanton        Health Visitor

Maria Smith                   Community Nursing Team

Michele Riceman  Community Nursing Team

Felicity Wright         Superintendent Physiotherapist




Heidi Chottin           Chief Legal Officer & Council Solicitor

Phyllis Abraham   Redbridge Legal Department

Teresa Walsh Jones      Social Worker & Child Protection Enquiries Team Manager C & F Team

Denise Martin           Social Worker & Manager of Children with Disabilities Team C & F Team

Maria Murphy            Social Worker & Child Protection Officer C & F Team

Paul McCarthy     Social Worker Principle Officer C & F Team

Kevin Sole        Social Worker Emergency Duty Team

Emma Sawyer       Social Worker







19 Aug 99

Date child Conceived

05 Jan 00    

1st antenatal Scan Ultrasound scan at KGH –Diaphragmatic hernia on foetus

 Diagnosis of diaphragmatic hernia

06 Jan 00 21wk

Gestation UCH Ultrasound scan & Amniocentesis

26 Jan 00   24wk

Gestation second USS at University College London Hospitals

18 Feb 00    28wk

Gestation Echocardiography at GOSH

24 Feb 00  


22 Mar 00     33wk

Gestation Robinson refused DH operation

28 Mar 00

  USS at KGH

25 May 00

   Sunaina Chaudhari born at KGH at 00.10hrs

26 May 00

   Sunaina taken to GOSH for Echocardiograph 15.00hrs

26 May 00

   Parents met surgeon at GOSH about DH operation – no decision

30 May 00

   Parents met geneticists at GOSH about DH – no decision

01 Jun 00

DH operation performed on day 8 at GOSH.  Stomach perforation found and repaired

08 Jun 00  

Return to King Georges Hospital SCBU

21 Jun 00

Started to wean off CPAP

18 Jul 00

Second discharge planning meeting

19 Jul 00

Off CPAP – on low flow oxygen

30 Jul 00

First set of vaccines

01 Aug 00

Discharged home

3rd August 2000 23.8.00

Visit to hospital –concern about airway secretions

10th August 2000 2300

Visit to hospital

Blood noted in NG Aspirate

12 th August 2000

Visit to hospital

Increase in secretions

13th August 2000

Visit to Hospital

Lower respiratory Tract Infections


Visit to Hospital – blood in stool

Incident 1 Oxygen – Clover Ward

Responsibility for the patient lies with the Trust as soon as the child enters the premises – this is thus the nursing staff and doctor’s responsibility NOT THE MOTHER

16th August 2000

Incident 2 Redbridge 16 Aug 00      Oxygen incident with ambulance man during hearing test appt reported to 999 Police

Children’s centre

22 August 2000

Multidisciplinary Meeting

07 Sep 00

      OPD appt with Shirsalkar – VSD closed

15 Sep 00

Second set of vaccines & first dose of Polio

26 Sep 00

   Chest x-ray – both lungs same size, no sign of lung disease

25th September 2000

Visit to hospital

Incident 2 Oxygen cylinder

This again was merely an oversight and in any event the TRUST is responsible for provision of oxygen once the patient enters the hospital

1st October  2000

Admission To Clover Ward King George Hospital 01 Oct 00 Admitted to KGH with throat infection – Prescribed well by Dr S Sahi

02 Oct 00

   All medication & CPAP stopped by Dr Shirsalkar

04 Oct 00

   Overdose with Ranitidine x 10

5th October 2000

First Letter to Chief Executiv

5 Oct 00    Doctors and nurses ignored desaturation alarms for 6 hours Sats 38%

Complaint to Chief Ex Peter Murphy

Complaints against mother

10 Oct 00

  4 hours of meetings - Psycho-social meeting first followed by strategy meeting called at short notice – no cause for Sectioning or EPO

13th October 2000

Transfer to Addenbrookes requested by local MP – date offered 23 Oct

14th October 2000

      Awaiting transport for transfer to GOSH

19 Oct 00

   Date of application to High Court for declaration to withhold treatment


20th October 2000

20 Oct 00    Drs Robinson & Shirsalkar visit GOSH intensivists

Discussion with intensivists at Great Ormond Street


20 Oct 00   Ex-parte hearing at Redbridge Fam P Ct Orders for EPO & warrant granted at 23.00hrs

Outcome plan “ obtain a restriction order to exclude mother , father and aunt from ward” D331

Emergency Protection Order Obtained 24.55

Served on Mrs Chaudhari in the presence of 2 police officers by Teresa Walsh Jones


21 Oct 00   01.00hrs orders served on mother at KGH by two Police Officers and 2 social workers (Teresa Walsh Jones & Maria Murphy).  All medication & CPAP stopped.  Frusemide continued without blood monitoring. Water stopped

23rd October 200

Great Ormond Street  D360

95% saturated on nasal cannula oxygen

Resp 40 beats per minute

Chest Clear ( D 360)

DNR provided and signed for. 23 Oct 00    Assessment by GOSH intensivists at KGH – parents excluded at the last minute


1700 Meeting with family and King Georges Hospital staff ONLY – Informed of the unilateral decision.

Dr Petros and GOS intensivists

They did not meet with the parents . There is no record of this. No discussion regarding the DNR notice

23 Oct 00     Blister on lower lip

24 Oct 00   Bruise under tongue

24 Oct 00  Mum visited solicitor Andrew Beale to apply to overturn EPO

25 Oct 00   KGH doctors prepare to discharge Sunaina home as well enough

26th October 2000

26 Oct 00      Parents in Court to overturn EPO with Dr Robinson and Trust Solicitor Caroline Harrison as witnesses for the London Borough of Redbridge.  Guardian Ad Litem called late.  



Death of Sunaina

Events written below

30th October  2000

Post Mortem by Professor Risdon





17. Mrs Sadhana Chaudhari is a teacher by profession with the qualifications BSc and PGCE.  Please refer to the family documentation  where details are listed by the mother regarding the loss of her only child. Her husband Mr Rajesh Chawla is a Yoga therapist recently resident in the UK.  His mother tongue is Punjabi.


18.   Sunaina Chaudhari was the child of an Asian family who are originally from India. This family is very close with her Aunt Neelu Berry providing advocacy and support. This also confirms as with most Asian families that an extended family support exists and differs from the modern nuclear British family. The child should be considered in the context of her natural environment, which is her Asian culture. The extended family in this case is very inherently supportive.


19.   From the evidence presented to us, Redbridge NHS Trust did not provide an interpreter for Mr Rajesh Chawla until a formal complaint was made in October 2000 by Sadhana Chaudhari.  The omission of an interpreter during several important discussions about the welfare of their child resulted in his exclusion in the decision making process.  ( Refer to statement by Mr Rajesh Chawla)


20. This family are devout Hindus. This religion involves culture and customs that maybe misconstrued by the health professionals who lack insight.  Hinduism is a culture and a way of life. Individuals who lead their life in accordance to the Gita have beliefs in the “sanctity of life”. This should not be overlooked. We note that at no time was there any discussion regarding the implication of religion which should be part of the decision making process. As a comparator, the Jehovah’s Witness religion is greatly debated in the medical profession. The treatment of a child who was Jewish is considered by Dr Inwald and Dr Petros in their article

( BMJ, 6th May 2000).(Appendix 3C).  We note that in this case the Rabbi’s opinion was sought. In this particular case, the Hindu opinion was not taken into account.  There has been no debate or consideration of the implications of Hinduism; however, this aspect should not be dismissed.  In the very words of Dr Petros and Dr Inwald themselves “ The aim of intensive care is to treat the family, not just the patient”


21. This child was very much  “wanted” and “loved” by her immediate and extended family.  This is demonstrated by the concern they showed in caring for her.


“S1 states “ After a year of trying to conceive without success because of work pressures, I felt that a break from work might do the trick. So in April 1998, I requested leave of absence without pay for one year so that we could go for a long break in India and try for a baby”


22.   From this we infer that Mr and Mrs Chaudhari desperately wished for a child.


“ On my return I went to see my GP with our problem who referred me to a fertility clinic at Queen Mary’s Hospital in Sidcup, Kent. I did not have a period in September 1999 and a home pregnancy test proved positive. 




 23.  Having suffered long term fertility problems, this child was all the more wanted despite her disability.


24. In making clinical or legal decisions it is imperative to take into consideration the social aspects to reach a fair and balanced judgement.








25. Appendix 1 illustrates a summary of the salient features required for any professional. It provides the most succinct overview of the care required from healthcare professionals. It is vital that this is read by all those who read this report to familiarise themselves with the essential nature of Trisomy 18.



“About 10% of children with the full trisomy 13 and 18 live beyond the age of twelve months, but children are not statistics and in many circumstances accurate predictions of life expectancy are not possible.” SOFT


27.   FROM SOFT GUIDELINES Professor John Carey


a)  It is important to recall that about 5-10% of children with these syndromes do survive the first year of life, thus, the condition is not universally lethal as sometimes presented by health professionals.

b)  While the developmental disability in children with trisomy 18 and 13 is significant, it is important to recognise that children do advance to some degree in their milestones. They can interact with their families, smile and acquire some skills, such as rolling over, self-feeding, etc. if they survive infancy.

c) Families in these situations appreciate the opportunity to participate in decisions involving the care of their children. If you have any families dealing with the issues discussed, please keep SOFT in mind.


28. Failure of utilising appropriate mortality statistics




a)Sunaina was born in the year 2000

b) Her survival was predicted by the statistics of 1994, which is six years ago.

c) Medical technology has advanced since 1994. More intervention may have resulted in survival of many more individuals

d) Great Ormond Streets Letter “There is apparently 11 reported cases in the world wide literature who survived to teenage years”. We suggest that this is inaccurate since the oldest living person was not a teenager but aged 40 and in addition there are many cases above six months of age.

e) It is noted that SOFT have 360 members who are survivors over the age of six months (please see appendix 3)

f) The oldest survivor was 40 years old.

g) These are members just in the USA. It is predicted that the numbers are far greater worldwide

h) The survival of females is greater than males.




A5a states that “ as we all know there is a 30% mortality rate at one month of life, 60% at two months and 98% within one year. (Paediatric Intensivists, GOS)

30.   Given the most recent data, it is not unreasonable to postulate that due to either the lack of statistics pertaining to year 2000 or  provision of information from the most recent expert source (SOFT), the figures of survival quoted here by Intensivists, were outdated and lacked the best evidence-base available.  In addition the figure presented is not referenced. The opinion of this patient being a “ futile” case is based simply on outdated and historical attitude and belief. 

This confirmed the ingrained professional prejudice displayed by medical opinions of GOS intensivists for this case. 


31.   Furthermore, throughout the case notes and referral letters, the quoted statistics of mortality have relied erroneously on assumptions on Trisomy 18 outcome based purely on that predicted during pregnancy or at birth.   

In this case, Sunaina Chaudhari lived to the age of five months.  It is stated by Professor Carey (AB82) who is a renowned specialist in this subject that

“ … the chance to survive to a year are higher than they were at birth” .


32.   From this we conclude that her survival was greater that stipulated in the figures quoted by the Intensivists of Great Ormond Street on October 20th 2000.  However the fact that the “ chance to survive is higher than at birth and this value is unknown due to no research on this subject “ was not explained to Mr and Mrs Chaudhari. Their figures are incorrect at five months of age.  Some studies have indeed shown a greater survival at 6 months in comparison to previous studies done. EG


“However, we had a significantly greater survival at 6 months (9% in Utah versus 3% in Denmark) and 1 year (5% versus 0 in the 3 studies “(Am J Med Genet 1994 Jan 15;49(2):170-4 Root S, Carey JC)




33.   The National Health Service directives prides itself in ensuring equal access to healthcare for every individual. The treatment of Trisomy 18 patients and their families is no different.  We thus refer to the NHS Plan listed below


The NHS Plan - opportunities for improving health and access to health services for black and minority ethnic populations. This is a working document, which we refer to. (Department of Health) 

34.   ‘Services must be delivered with regard to cultural appropriateness’.

1. The vision: a service designed around the patient

This is an opportunity to refocus services so that they begin from the

individual, needs and characteristics of patients. This means taking full

account of every patient’s ethnic cultural and religious background.

1.9 Advice to enable people to take care of themselves and their families

will need to respect cultural and religious differences and preferences.

.1.18 Intermediate care services will need to provide for the needs of all

patients including those from minority ethnic groups respecting the full

range of cultural and religious practices.

1.21 NHS standards should include sections on cultural competence, with a

common means of assessing this, including patient and user surveys.


35. We understand from the documents that the parents were strongly advised to

“ terminate the pregnancy “ from the outset. This was in direct conflict to the parents wishes and religious beliefs”


“We felt pressured by doctors” comments such as the fetus will die inside me, the fetus will not make it to full term, it will die during labour and that if it was born alive that it would only live for a few hours”

“ Due to our strong religious beliefs that the baby was a gift from God, we continued with our pregnancy” Mr and Mrs Chaudhari .

36. Professor Charles Rodeck FRCOG  2/01/2000  ( R7)

“She was seen by Ms Wright (paediatric surgeon)

The diaphragmatic hernia itself carries a mortality of 50% with Edwards’s syndrome this is increased such that the baby is very likely to die shortly after birth. It would not be appropriate to operate in these circumstances…”


NB It should be noted that the baby survived the operation.


“The couple wish to continue the pregnancy and for the baby to managed as appropriate at birth”

“ They were seen by Dr Hawdon (Consultant Neonatal Paediatrician at UCH) who explained that in the circumstances neonatal intensive care would not be appropriate. The parents disagree and do not wish to be booked at UCH”


37.   Comment:    From this we infer that from the very early stage of pregnancy, there was a clear divide: between the clinicians to limit intervention and enhance permissive mortality of the foetus and parents’ wishes to protect their unborn child. There was no recourse to reach agreement. This nurtured a fundamental deep mistrust between medical professionals and the family.


37. We thus conclude that at no time previous to or during the treatment of this child were the

a)          Cultural differences taken into account

b)      Religious beliefs considered

c)   The parents faced negative approaches from the clinicians involved with very little explanation or discussion to resolve this differing opinion.

d) In these circumstances, it would be a natural reaction for parents to perceive that, as the medical professionals had condemned their child, they would not provide objective or positive opinions towards the care of this child.

e) This naturally caused disharmony and friction between the doctors/nurses (caregivers) and the parents (care-receivers).  All reactions of the mother must therefore be taken in this context.

f) It is accepted that the clinicians wished to terminate their child, did not wish for any intervention and in general had in effect doomed a child based only on the statistics regarding Trisomy 18.  Each child has a right to be treated as an individual. Not all Trisomy 18 children die within a few weeks or months of life.  ( See Section 12)

g) There was a distinct lack of communication with regard to the specialists who were suggesting the death of their child. 



A few directives are observed below. These show the standard of practice required for the “ reasonable doctor”


4.3. Good communication

Good communication between patients and doctors is essential to effective care and relationships and trust. It involves:

* listening to patients and respecting their views

* giving patients the information they ask for or need about their condition, including its causation and relationship to work (where known), its treatment and prognosis, and any remedial steps that can be taken to limit its effects or prevent recurrences

* giving information to patients in a way they can understand.

If a patient under your care has suffered serious harm, through misadventure or through a mistake or omission, you should act immediately to put matters right, if that is possible. You should explain fully and promptly to the patient what has happened and the likely long- and short-term health effects. When appropriate you should offer an apology.


39.   Natural History of Trisomy 18 and 13. American Journal of Medical Genetics 49:175-188(1994) Bonny Batty, Brent L Blackburn and John Carey

“ There also tends to be skewing of information toward the extreme negative, with families often being told that their child has no chance of survival, and more importantly, little chance of meaningful interaction with their families. “.


40.   Dr Una MacFadyen Paediatric Consultant and Medical Adviser to SOFT UK


“ As always the need for communication is paramount among all professionals involved. Anyone of us may see only a few babies with Trisomy and may not have the latest information to hand. “


41.   Developmental Disabilities Digest

“It is equally important to remind parents that 5-10% of children with trisomy 18 do survive the first year of life, and those who do survive usually advance to some degree in their milestones and interact with their families in many ways. Thus, the outlook is not necessarily hopeless. For long-term survivors, many of the early problems become more manageable as physicians, specialists, and parents’ work together to find appropriate solutions. In any case, it is important to focus on the unique medical circumstances of the child and the personal feelings of his or her parents.”

Golden Gate Regional Center

120 Howard Street, Third Floor

San Francisco, CA 91405

(415) 546-9222

Theodore A. Kastner, M.D., M.S.

Felice Weber Parisi, M.D., M.P.H.

Romie H. Holland, M.D.

Patrick J. Maher, M.D





42.   Throughout the literature it much be said that very few studies have been conducted on Trisomy 18. In the absence of recent research it is important to provide the reader with an overview of the quality of lives that these children lead.  Great Ormond Street and many other institutions would wish us to believe that these cases are futile. Is this necessarily so?  We would like to state that 10% of children might indeed survive according to the 1994 research  and the attitude of futility would lead to the death of this 10 % who indeed may survive. It is very difficult to predict survival of an individual patient.


43.   This is quoted by the health professionals involved in the care.


R1 and R2 Letter from Dr Louise Wilson to Mr and Mrs Chaudhari 1st June 2001


“ We do not fully understand why occasional children with Trisomy 18 survive much longer than the other children”


“ In any individual child it is very difficult to predict their survival… “


“ From our discussion I do fully understand your wishes to give Sunaina the best quality of life that you are able to and as much love and care for her family as possible”



Letter from Dr A Petros  (0515) Paediatric Intensive Care. Great Ormond Street London


“The exact prognosis in this case is uncertain but it is unlikely she will survive more than a few months


44.   We would like to state that during our research we have found many children leading fulfilling lives and whom their families care for.  There are some children who have been worse than Sunaina Chaudhari with multiple problems, yet they continue to live well.  There are many misconceptions about the quality of life these children lead. It must be understood that these children are not in a “ persistent vegetative “ state.  They are able to interact with the environment and their families.  We demonstrate this by a selection of the numerous cases that have defeated the medical professional’s attitude of futility.


Professor I Young, Department of Clinical Genetics. City Hospital Nottingham


“ Surviving children of Edwards syndrome have marked developmental and motor delays. Their verbal communication is severely impaired, and is limited to a few single words at best; but they are mostly aware of their environment and are able to communicate some of their needs non-verbally. They continue to acquire new skills over time and develop some understanding of language. A few can walk with assistance. Overall, their skills in daily receptive language and social interaction tend to be higher that their motor and expressive language abilities”



Case 1

From: Andreas and Darcy Nahme <>

Sent: 15 May 2001 02:45

Subject: Sunaina


 I write to you as a mother of a 5-month-old infant that has trisomy 18.  I read the article you speak of and find it quite appalling. My daughter is in no way "incompatible with life". As a matter of fact, her cardiologists just tried to be able to perform open-heart surgery to

 repair her heart defects, but due to some unforeseen circumstances, was not able to. She did have a heart catheritization and went on a ventilator and came off within an hour after the procedure. She was transfused with appx 70 cc of compact red blood cells. This is just one

 example of what kind of treatment my daughter gets here in the US. I  know what could possibly happen to Savannah, but I also know that shebrings me great joy and unconditional love. No one in their right mind will ever choose my daughter’s outcome. She is here today and is proving doctors wrong each and every day. I was so saddened when I read that

 article. Please feel free to visit my website, it is listed in my signature line. Good luck and if you need any further information I

 would be glad to help as much as I can.


 Thank you,


 Darcy , Andreas

 Corpus Christi, TX USA

 Beaming parents of Savannah Kristyne (full T-18) born 12/12/00


Comment – This is a case that is considerably worse than Sunaina yet she was not met with a Do Not Resuscitation Order. Why?

46.   Other cases

Other surviving children






These are a few children with similar stories. They are a selection of the many.

47.   Case 2

See Appendix 2A for complete details

Kirsten'sbattle with trisomy 18  helps the Guptills see every  day as a miracle

Kirsten, all 3 feet, 221/2 pounds of her, turns 6 on April 2.

Kirsten had similar abnormalities to Sunaina.

This patient is still living. In addition, we see that she has proved medical professionals wrong.

48.   Case 3  Details in Appendix 2B

Judith Wolpert

Our daughter Kameron has full Trisomy 18. She was born May 8, 1997 in Charleston, South Carolina. We knew of Kammie's diagnosis at about twenty-four weeks into the pregnancy. Kammie has no heart defects, but she is globally delayed. She is terribly spoiled by her big brother (Derek - 14) and big sister (Kelsey - 12). We are working on prop sitting and started three-year-old public school in the fall.

Kammie has under-developed thumbs and is currently on a diet! She is fed through a Mickey button and receives Pedisure with Fiber, essential fatty acids, and a laxative tea. Her weekly therapies include speech, occupational, aquatic and physical

49.   The above illustrates that many cases do survive to older age and this would be the best current evidence.  In addition, research should provide assistance but certainly not be the only factor in deciding a person’s life.







50.   The Emergency Protection order was obtained by on the 20th October 2000 by the Respondent’s Solicitors. 


It states that the (C16) Court directs “ that contact by the parents shall be as directed by the local authority. The court excludes Mrs Neelu Berry with contact with Suniana. “




52.   In Dr Petros’ letter from Great Ormond Street (25th October 2000)(A2B) states that

      “ In these sad cases we would recommend “family centred palliative care”

      Yet D331 20/10/00 it is listed

      “ Discussion with intensivists at Great Ormond Street. Outcome plan

      To obtain restriction order to exclude mother, father and aunt from ward”


This was the recommendation of Great Ormond Street Children’s Hospital. On the basis that Great Ormond Street consider the prognosis poor we will continue to discuss the management


53.   The definition of family

“A group of people connected by close relationship. A family is usually limited to relationships by blood or marriage. 

By virtue of this definition Suniana Chaudhari’s family were denied to right to be at her side by Great Ormond Street and King Georges Hospital. 


This action of EPO contradicts the directive provided by Great Ormond Street itself.


54.   Great Ormond Street further acts contrary to its own advice it their letter GO33 25th October 2000 (same day as the above) where they supported the actions of the Emergency Protection Order by writing to Ms Caroline Harrison (disclosing details of the patients and family without their consent). Data possessed by Great Ormond Street  is governed by the Data Protection Act 1998 . No consent was obtained by GOSH from the family in order to write to solicitors of the King Georges Hospital. A solicitor is not an individual who is part of the “ care team” . No consent was obtained that was written or verbal.


55.   Great Ormond Street seems to contradict their own recommendation in supporting the removal of the parents from the care of their child while previously suggesting “family centred palliative care” in the letter to Dr Robinson.


56.   Comment: We feel that there should have been a duty of care of Great Ormond Street to speak to the parents at this time to deduce the correct events as opposed to disclosing documents after making a decision on hearsay (please see discussion below).


57.   Other directives for the care for patients with Trisomy 18



“Where there are major life threatening problems and the future of the baby seems hopeless, it may not be right to provide the highest level of life saving skills, but the decision not to give intensive care to prolong the life of a very sick baby does not mean that loving care is withdrawn. The child can be kept comfortable and peaceful with much of the nursing care being provided by the parent or parents and supported by the medical staff”.


b) The European Convention on Human Rights


      7.35 Article 8 of the European Convention on Human Rights states that:


(1) Everyone has the right to respect for his private and family life, his home and his correspondence.


(2) There shall be no interference by a public authority with the exercise of this right except such as in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.




We wish to provide a medical perspective of the basis of the order.  


a) It should be noted that Mr L Rogers is a lay justice of the peace with no legal training.

b) No documents pertaining to Mr and Mrs Chaudhari’s complaints about the hospital were provided, although available.

c) We note that the justice of the peace heard audience from

i) Maria Murphy , Social Worker

ii) Dr Anand Shirsalker

iii) Dr David Robinson


59.   Minutes of the meeting of the 22/8/00 and 10/10/00 were taken into account. We have taken the liberty of discussing the factual accuracy of these meetings. 

a) At no time were the family informed of the meetings nor the intention of an Emergency Protection Order.

b) There was no assessment by the social workers. There have been no entries in the medical notes or documents of assessment attached to the Emergency Protection Order application (There have been no assessments as stipulated by UK directives)

c) We have been unable to peruse the Social Services documents.



60.   Our medical opinion on the documentation included in the Emergency Protection Order application are as follows: -




61.   Social services owe a duty of care to carry out a full assessment of needs. This includes interviews with all the professionals and the family concerned. The main directive of practice is stated in the Redbridge Protocols for child protection. These are based on national directives provided by the Home Office.


62.   The leading document which is the directive in this case is from

 Department of Health Home Office

Department for Education and Employment

Working Together to Safeguard Children Published in 1999 and thus in force in 2000 ( APPENDIX 5)


63.   This document is intended to provide a national framework within which agencies and professionals at local level - individually and jointly - draw up and agree upon their own more detailed ways of working together. It reflects the principles contained within the United Nations Convention on the Rights of the Child, ratified by the UK Government in 1991. It also takes account the European Convention of Human Rights, in particular Articles 6 and 8.


“Good practice calls for effective co-operation between different agencies

and professionals; sensitive work with parents and carers in the best interest of the child; and the careful exercise of professional judgement, based on thorough assessment and critical analysis of the available information.”


64.   The legal representatives will tackle the other aspects of the Emergency Protection Order. It will suffice to add that an authority is bound by law to comply with The Emergency Protection Order (Transfer of Responsibilities) Regulations 1991 (section 3) where many factors are listed .


65.   On writing this report, we have not consulted any documentation from the Social Services. On questioning the family, we ascertained that at no time did interviewing either the immediate or the extended family take place   They were not aware that this was a Child Protection issue until the order was served on the 20/10/00 at 0100.


66.   None of the family members were informed.  No other avenue was sought. Under the Home Office recommendations, the local authority is under a duty to make enquiries. This was clearly not done. ( see Appendix section 5 on Significant Harm)


67.   On perusal of the documents listed in Appendix 2, there is no evidence medically or otherwise that the parents would have caused significant harm to the child. This is evidenced by the following factors


a) In discussion of the background of the family, we note the child was loved and wanted.  In fact throughout the records individuals were pleased with the care she provided. This was Mrs Chaudhari’s first child whom she did not terminate and whom she has attempted to fight to protect. This is noted in her letters to the Chief Executive where her concerns for the care of her child are made clear (5th October 2000). 


b)  The following contradictory entries to the indications of an EPO were made in the Social Worker’s statement to the court


Section 18 At the culmination of this meeting a clear view was not provided by hospital staff, which would suggest that Suniana had suffered from significant harm as a result of care, provided to her by her parents.  Furthermore, hospital staff did not provide an opinion that reasonable cause existed to believe that Suniana was likely to suffer significant harm as a result of the care provided by her parents.


68.   Section 20  ‘I received a response to my letter on the 23.10.00’.


The letter from Dr Shrisalker 19.10.00 states  “ taking a birds eye view of the whole situation, I do not think there is a child protection issue at the present time “.


69.   Section 25  “During the hearing Dr Shrisalker indicated that Mr and Mrs Chaudhari had recently suggested that they may remove Suniana to a different hospital as they were concerned about the appropriateness of the care provided at King George Hospital.


70.    D415-D416.  We note this document is both typed and written on the 25/10/00. It is listed as “ Care Plan for Sunaina Chaudhari”


Point 1 of this document states “ To go home on low flow oxygen via nasal cannula”


71.        From this we infer


i)         Dr Anand Shirsalker wished to discharge this patient to the family. His decision was made on the 25/10/00 (on the 5th day of the Emergency Protection Order)

ii) If she was in danger of “significant harm” – it does not seem rational or logical that this doctor would have made the decision to send her home

iii) Clearly in his professional opinion, the parents were able to take care of the child and it was safe to do so, that Dr Shirsalker was prepared to discharge the patient into their care.

iv) This action contradicts his own opinion of the 20th October2000 when he deemed an EPO was needed. These actions are illogical. To assume that on the 20/10/00 the child was in impending danger, so much so that an Emergency Protection Order was taken out at middle of the night (23.00hrs) without the parents’ knowledge or prior discussion.


72.   Comment:    We conclude therefore that the patient was never actually in any danger from her family




a) Parents cared and were committed to the well-being of their child, evidenced by the following


D74  “ Mother and father explained that they would like to offer everything for the baby to give a chance. They fully appreciate the poor prognosis and the possibilities of post op complications. However since the other option is death anyway, they would like to be given a chance and they are very committed to that”


D102  9/6/00 “ Mum cuddled baby and breast-fed baby”

Page 2  9/6/00 “ Mum and dad cuddled baby for one hour”


Maria Smith

C34 “Mrs Chaudhari appeared to be control whilst caring for Sunaina at home and provided a good level of care to Sunaina

D114 13/6/00 “ Mother cuddled the baby for a long time and seemed very happy since baby was put on nasal prongs “


Dr Shirsalker noted that  “ It was generally observed that Mr and Mrs  Chaudhari provided a good level of care to Sunaina whilst she was being cared for at home”  (meeting 10.10.2000) meeting.


Dr Robinson “ … it is difficult to confirm that Sunaina has suffered or is likely to suffer from significant harm as a result of care provided by Mr and Mrs Chaudhari” (10.10.2000)


Pam Hanton

“ Mrs Chaudhari presented as calm co-operative during visits undertaken by Pam Hanton. Her care of Sunaina was EXCELLENT. Mr Chaudhari’s care was “ superb” and he spent time singing, and providing body message to Sunaina which she enjoyed “ ( Meeting 10.10.00)




“ It has been stated that Mr and Mrs Chaudhari’s care of Sunaina has been satisfactory when she was at home”


“ No medical view or opinion has been provided at the meeting to suggest that Sunaina has suffered significant harm as a result of Mr and Mrs Chaudhari’s care “ 10.10.2000 meeting


EMMA SAWYER  “ No concerns were noted in relation to the care provided to Sunaina whilst she was at home.

D116 14/6/00  “ mother did all cares “

A D120 17.6.00  “ parent in and mum does all cares “

D162 10.7 .00  “Baby care for by Dad in the afternoon. All observations satisfactory.    


75.   These are examples of the recordings throughout the medical records. They show good mother to baby bonding, concern for the child, and protective parental qualities expected of any reasonable parent.


76.   2.18, 2.25, 2.26, 5.11, 7.23 and Other Cultural factors were not considered by the social services team. This is a failure of their duty of care to the family and the child.







a) Failure in communication with the family

b) Failure to conduct a complete assessment to take all factors into account

c) Failure to assess the concept of “ significant harm”

d) Incomplete documentation presented to the court which has misled proceedings

e) Failure of duty of care to ensure protection of the human rights of the child and family.







There have been a number of allegations made by the staff at Redbridge NHS Trust and Community teams.  We would like to examine whether there is any scientific basis for these allegations and whether they constitute “ significant harm”. This is because these allegations were used to gain the Emergency Protection Order.













Mr L Rogers Justice of the Peace. We observe his notes as the only records of the hearing held at 2300 on 20th October 2000 (C18- 22)


Mr Rodgers states

“ Mrs Chaudhari has barricaded herself into the hospital room where Sunaina is being treated and has placed objects over the door so she may alerted to nursing staff and doctors upon entering. These were 19/10/00 at 2am and 5.20 am and 8.45am. Also 20/10/2000 at 11am.


Ms Maria Murphy states C26

“ Barricaded herself in the room preventing access by the medical staff”


81. It is listed that Mrs Chaudhari had asked the nursing staff to alert her when they entered so she may observe their attendance to the child. The nursing staff refused this request. 


82. Due to the refusal it is established that Mrs Chaudhari concerned for her child placed a spoon to balance on the door handle so that she could be alerted e.g. like an alarm.


83. “Everytime I have left the room Mrs Chaudhari has barricaded the room with a chair and cutlery placed on top which clangs and falls each time I open the door.”  D1315


84. It seems illogical that Mrs Chaudhari should prevent anyone from entering the room where her child was being cared for.  This has not been documented in any previous admissions and indeed Mrs Chaudhari has never actually PREVENTED anyone entering the room even on this occasion. 


85. The facts are that individuals made entries in the records on the above times and also were able to carry out their tasks. They had seen the child and Mrs Chaudhari had not objected to their entry.


“Mum was standing up as if waiting for us to go in. Sunaina was sleeping and very settled. Sat 99% in CPAP 6cm.”


At 0520 19/10/00 D315 Julie Stokes was indeed allowed to enter and perform her duties and observations.”


* The implication in Mr Rogers’ notes is that the mother barricaded herself in her room preventing care being given to her child.

* If this was indeed so, how did the nurse enter the room, see the child asleep and was able to take the saturation’s without any criticism from Mrs Chaudhari?


86.   The nursing staffs were never actually prevented from doing their duties.


As there were numerous entries in the records suggesting clinical observations actually had taken place for the patient, this elucidates that nursing staffs were indeed allowed to care for and attend to the patient.   At no time was this prevented.


87.  The chair is a very lightweight plastic stacking chair and the spoon was used not to barricade the door to prevent entry BUT AS AN ALARM.


88.   We conclude therefore that Mrs Chaudhari’s motive was to use this method as an alarm, not for blocking purposes or for prevention of treatment.


NB we were not allowed a picture by the offending chair used by the Trust concerned.


89.   This method of alert was clearly portrayed to be “alien” to the magistrate and assumed to be “mother’s paranoia” by the staff.


90.   A reasonable patient or parent who places objects behind doors to alert them to anyone entering the rooms may be because

* They want privacy

* They have a fear of unknown persons entering a room when asleep

*  They may well be in a state of undress at night!


These would be the actions of the “ reasonable person “ and should not impute “ incompetence or a psychiatric condition”


91.   It should be noted that for ones protection – this is the only practical way of knowing someone has entered the room as there is no alarm or locks on hospital doors. A hospital room lacks privacy for this very reason and it is both difficult for parents and patients alike to obtain this at long periods of stay.


We therefore consider this a reasonable method for an alert.  This may be unusual to the staff but nevertheless logical.


92.   In conclusion, the chair and spoon were used as an alarm not a barricade given that no-one had actually been prevented from entering the room and there was a clear record of observations during this period by nursing staff.



93.   C26 is therefore misleading and factually inaccurate.

C20  “Great Ormond Street Hospital wish to make an assessment on Monday as to the immediate needs of the child’s future. Evidence has been presented that parents and aunt are obstructing treatment and preventing staff from carrying out their care…… we therefore believe the only way to enable the assessment of Great Ormond Street on Monday is to make an EPO.


94. The above is illogical. It was at Mrs Chaudhari’s request to the Chief Executive that Great Ormond Street’s opinion was sought.  If this is so, it seems strange that the Justice would assume that Mr and Mrs Chaudhari would obstruct Great Ormond Street given it was her idea  initially.


95. C21 “ And they do not accept the serious nature of Sunaina’s illness and the prognosis is she will not survive. As a result it is felt that they will obstruct any further attendance, observations and treatment of their daughter. 


Mrs Chaudhari wished for a second opinion at all times.


As evidenced above she has not “ obstructed attendance, observations and treatment of her daughter and therefore it would be illogical to assume this would be so in the future.







Throughout the medical records we observe that there are various assumptions and misleading statements made regarding the use of oxygen and it effects.


There are two forms of allegations

* Tampering with actual Oxygen supply and consequences of oxygen administration

* Use of CPAP


Firstly, we would like to clarify the scientific basis and reliability of the medical advice stated in the meetings and correspondence. 


98.   In the meeting 10.10.00 the Consultant Dr Shirsalker made the following statement: -

“ If the oxygen supply is too high, the mechanisms to fight infections can be damaged” C34 By Dr Shirsalker

99.   We would like to question this entire statement (point 98) which is both misleading and incorrect.

a)    In the literature we observe that from scientific evidence, high oxygen levels ACTUALLY IMPROVE THE MECHANISMS TO FIGHT INFECTIONS.  

b)    Mechanisms involved in fighting infections are cellular components.  Oxygen improves the ability of the cell to combat infections. This is clearly demonstrated in many scientific papers. In addition, common logic will lead us to infer that insufficient oxygen supply to cells results in the death of cells whereas increased oxygen increased the efficiency of cellular components such as neutrophils. 


c)    Scientific Reference

Sessler, D.I., et al. Supplemental perioperative oxygen to reduce the incidence of surgical-wound infection. Outcomes Research Group. New England Journal of Medicine 2000 Jan 20;342(3):161-167. [ Abstract]

BACKGROUND: Destruction by oxidation, or oxidative killing, is the most important defence against surgical pathogens and depends on the partial pressure of oxygen in contaminated tissue. An easy method of improving oxygen tension in adequately perfused tissue is to increase the concentration of inspired oxygen. We therefore tested the hypothesis that the supplemental administration of oxygen during the perioperative period decreases the incidence of wound infection. METHODS: We randomly assigned 500 patients undergoing colorectal resection to receive 30 percent or 80 percent inspired oxygen during the operation and for two hours afterward. Anaesthetic treatment was standardised, and all patients received prophylactic antibiotic therapy. With use of a double-blind protocol, wounds were evaluated daily until the patient was discharged and then at a clinic visit two weeks after surgery. We considered wounds with culture-positive pus to be infected. The timing of suture removal and the date of discharge were determined by the surgeon, who did not know the patient's treatment-group assignment. RESULTS: Arterial oxygen saturation was normal in both groups; however, the arterial and subcutaneous partial pressure of oxygen was significantly higher in the patients given 80 percent oxygen than in those given 30 percent oxygen. Among the 250 patients who received 80 percent oxygen, 13 (5.2 percent; 95 percent confidence interval, 2.4 to 8.0 percent) had surgical-wound infections, as compared with 28 of the 250 patients given 30 percent oxygen (11.2 percent; 95 percent confidence interval, 7.3 to 15.1 percent; P=0.01). The absolute difference between groups was 6.0 percent (95 percent confidence interval, 1.2 to 10.8 percent). The duration of hospitalisation was similar in the two groups. CONCLUSIONS: The perioperative administration of supplemental oxygen is a practical method of reducing the incidence of surgical-wound infections.


We are able to provide other scientific papers to contradict his stated opinion.

100.  Comment:   We conclude that

a) The information was inaccurate leading to assumptions and also defamatory remarks about the mother.

b) The parent’s actions were actually beneficial to the patient, contrary to liability portrayed. 

c) The evidence above shows Dr Shirsalker to be negligent in providing information. This has led to assumptions being made for the Emergency Protection Order and at meetings

d) We would like to therefore question the accuracy of his other statements.


101.  The second statement is made in the letter dated 22.10.00 GO33 from Dr Petros to Caroline Harrison


He states “ High concentration of oxygen via nasal cannulae can cause pulmonary fibrosis or lung damage. Unnecessary oxygen enriched air for long periods may also cause similar changes “


102.  The scientific facts are

i)    The amount of oxygen supplied through nasal cannulae is restricted by flow.

ii)   The maximum amount through nasal cannulae is approximately 2 litres (which is equivalent to 30-40% FiO2). Dr Petros may be referring to hyperbaric oxygen levels (100% FiO2 ie at least 8Litres flow) which were not used here.

ii) There are no clinical studies or animal studies to suggest that oxygen given by nasal cannulae causes lung damage.  Thus, nasal cannulae oxygen does not cause pulmonary fibrosis nor does it constitute “high concentrations of oxygen”

iii) Tests with hyperbaric oxygen are known in animals but nasal cannulae cannot supply this amount of oxygen .


104.  This statement (point 101) to support the EPO is therefore factually and scientifically inaccurate and intentionally misleading to the parents and legal personnel court.





Thus, the medical information contained in these letters were intentionally misleading and false when seeking an EPO.




There were many incidents noted regarding the oxygen supply. In our opinion we do not feel they are significant, as they could have a simple or accidental explanation. Nevertheless to clarify matters we have endeavoured to stipulate the directives that operate in each situation.


106.  INCIDENT    1 and 2 and 3

      15.8.00 Clover ward

      16.8.00 Redbridge Children’s Centre

Oxygen was apparently turned up at home during August 2000


107.  These incidents (106, 1&2) occurred at health centres. The parent received the blame on such occasions for “holding an inadequate supply of oxygen”. It is said in the court papers that her husband had the spare oxygen cylinder in his car.


108.  We have a few comments to make on these two incidents

1) The circumstances were accidental and not intentional

2) There is no motive that the mother intended to harm her child

3) Finally, all NHS directives stipulate that once the patient has presented themselves for medical care, the responsibility of the health institution  exists to ensure that appropriate medical care of the child is given  at the time of entry to that building.

4) We would therefore stipulate that Redbridge Child Care Centre should have a supply of oxygen if they are treating patients that require this. Clover ward had an adequate oxygen supply although still placed the blame on the parent.

5) Any clinical incident occurring on NHS premises is the responsibility of that NHS institution.

6) We therefore suggest that facilities may have been inadequate at these centres.

7) No inferences therefore can therefore be made from these two incidents regarding ‘significant harm’ due to the above.


109.  Incident 3   Contradictory evidence


KW30 states in a multidisciplinary meeting that (Michele Riceman)


“ Explained that at on arrival at EVERY visit the oxygen has been turned up to 0.4 L when at the previous visit it is turned down to 0.2L”


In actual fact despite this statement in the minutes of the meeting where she took great pains to degrade the care provided by Mrs Chaudhari , we note that “EVERY” is an inaccurate word. On perusal of her own records of the care provided (HC10) we note that throughout her visits there was only one occasion where she found the oxygen turned up.


HC10 7/8/00 “ In 0.4L O2 on arrival, dad said he had forgotten to switch down following suction. Explained that rate does not need increasing unless Sunaina is experiencing difficulty breathing. Turned down to 0.2 L. Father only present “ Signed Michele Riceman.


110.  Comment:  It is common knowledge that increasing the Oxygen to 0.4 L does no harm to the child. It was perfectly feasible to have had it turned up following suction or other activity.

This incident (109) was accidental and irrelevant. It bears no relevance towards facts of incompetence.  








There have been many recorded incidents regarding the CPAP machine.  When considering this we should take the training Mrs Chaudhari had since her child’s birth.  Mrs Chaudhari was responsible for Sunaina’s care 24 hours a day. In addition she was taught by staff at Special Care Baby Unit on how to work the CPAP machine. Once the CPAP machine is set up, the procedure of checking saturation’s and the day to day workings is very simple and would not cause any harm.  During her time with Special Baby Care she was allowed to control the CPAP machine.


113.  We took the liberty of testing Ms Chaudhari’s knowledge of the CPAP machine


a)    ACCOUNT WRITTEN WITHOUT ASSISTANCE (this can be examined at a later time on questioning)


“The oxygen supply for the CPAP machine came directly from the wall with acircular socket. The wide circumferenced tubing attached to the CPAP machine which allows oxygen through is inserted into the circular wall socket by pushing into it and then by turning it so that

it locks. The humidifier barrel is slid into place and topped up to the

marked level with sterilised water .The tubings are connected from the

humidifier and from the face of the CPAP machine to the nose piece. The nose piece is attached to the patient via two elasticated attachments which are threaded through holes in the special CPAP cap worn by the patient. By adjusting the elasticated attachments to the correct position and tension the nose piece can be fitted into place on the patient.The electrical plugs from the CPAP machine are plugged in so that the readings on the face of the machine are seen and the temperature of the humidifier can be seen. The temperature of the humidifier is set between 36- 37 Ci.e body temperature. Once the temperature of the humidifier has been reached and stabalised the CPAP machine is ready to be connected to the patient. There

is a special plug fitted on top of the humidifier, which can be used to top up the level of water in the humidifier, which decreases, with time of use

. The oxygen from the wall supply passes through the humidifier reaches body temperature before entering the patient. The pressure gauge on the face of the CPAP machine needs to be maintained in the correct range shown by green/yellow light. If the range is within the red light then the pressure needs to be checked, either by checking the nosepiece or by adjusting the pressure control to the correct range. The oxygen control is adjusted so that saturation (Sats) are maintained between 98- 100%. I was left to control the CPAP machine when Snaina was in SCBU-Special Care Baby Unit, and during the

last admission from 1-10-00. I hope that I have covered everything.””






      July 18 2000

See D158 for preliminary discussions about discharge, reference to 'Infant

flow driver, by observing nurses she has learnt to use it'

See D159 'Assess what Mrs C has learnt about Infant flow driver and begin to

provide further teaching identified'

See 136 “ Agreed to change nasal prongs and O2 cylinder for practice” (24/6/00)

See “ Orogastric tube and nasal prong changed this afternoon, mum changed the O2 cylinder for practice"”(24/6/00)


D137  “Supervised mother in oral suctioning and inserting nasal cannulae. Satisfactory in both”  (20.20, 25/6/00 (Sandford)


* Vera – Mrs Chaudhari told Vera that she already knew how to fit the cap and nosepiece but asked how to connect the tubes. Vera said it was easy and spent 5-10 minutes demonstrating it

* Eileen Regan - Night nurse- Mrs Chaurdhuri watched how she put on CPAP and took it off on many occasions

* Diane - main person who showed Dolly how to work the CPAP machine

* Barbara - Showed Dolly how to adjust the controls to bring the sats up


114.  COMMENT:

We are satisfied from the above that Mrs Chaudhari was able to use the CPAP machine adequately and had been trained by the Special Care Baby Unit staff to do so.  This is also evidenced by the fact that throughout the records there are no incidents documented (nor critical incident risk forms) where her child came to any harm whilst this was used by her.


115.  It is established fact that Mrs Chaurdhuri spent 24 hours caring for her baby. She is an intelligent and able lady who was able to work the CPAP machine adequately. 


116   Throughout the records, the aim was to wean the child off CPAP therefore it was not unusual for Mrs Chaudhari to intermittently take Sunaina off the CPAP machine, as she was experienced in this from her last admission.


117.  Intermittent CPAP is also beneficial to the child and accepted in practice to prevent nasal excoriation.


118.  GO33 “ Delivering mechanical ventilation in the form of continuous positive ventilation. Albeit a gentle form of ventilation could be potentially lethal in untrained hands if a mechanical errors occurs. CPAP should certainly not be applied by anyone other than medically authorised personnel “ by Dr Petros Great Ormond Street”


i)    There were never any mechanical errors over the two months that Mrs Chaudhari was allowed to use the machine and therefore the probability that this would occur is identical to the medical staff.

ii) The comment is thus misleading given that Mrs Chaudhari had been allowed to use the CPAP machine on many occasions.  Infact Dr Robinson in his meeting on 10/10/00 stated that “an option would be to discharge the child on CPAP”.


119.  Comment:      We thus consider this generalised statement by Dr Petros to be inappropriate for this case.  The opinion relayed in such a statement provides an inaccurate emphasis as it is based on assumptions with no due regard to the training Mrs Chaudhari already had.





See chronology page 5 of 12th Sept – Mother refuses to accept that she was over wrapping Sunaina.  After an incident when Sunaina went all cold, mother ensured this did not happen again  


121.  We have not seen any communications between the staff explaining in detail the logic behind removing clothes. It should be noted that this failure in communication has resulted in numerous accusations of incompetence alleged. These are false accusations as a) no documented temperature to prove hyperpyrexia and b) wrapping this child in clothes did not produce significant harm and  c) therefore should not be considered as such without positive evidence.



The statement written by Dr A Petros states  (GO33)

“ Finally we were informed because of the family’s holistic/homeopathic beliefs Sunaina was having fragments of glycerine suppositories inserted into her rectum every four hours”


“ Repeated and frequent unnecessary insertion of rectal suppositories can lead to anal canal tears and subsequent infections which could be ultimately life threatening “


123.  These statements are disputed as


a) There is no documentary evidence that this ever occurred (in any clinical notes)

b) There were never any such infections, in any event this is extremely rare in paediatric practice, with no such clinical reports in the medical literature

c) If glycerine suppositories were used, they would need to be prescribed due to clinical need

d) While in hospital, all medications are usually supplied to patients by nursing and medical staff.  

124.  Comment:


a)    In conclusion, we find the basis of Emergency Protection Order was factually inaccurate and medically ill advised.  

b)    The initiation of this order was based on issues unrelated to the care or competence of parents. The parents did not pose any significant harm to the patient; rather they became an irritation to the staff.  

c)    Deteriorating staff patience, irritation and dissolving communications promoted the use of an EPO to obtain a way for staff to exclude parents from the ward and their child.

d)    The Emergency Order taken out on the basis of the information supplied here was fraudulent. 

e)    EPOs is used in cases of abuse and neglect where there is a risk of significant harm to the patient. 

f)    The Paediatric staff of King George and Intensivists at GOS have abused the use of the Emergency Protection Order. 

g)    The Chief Executive failed to take appropriate action when these disputes were brought to his knowledge by way of a letter of complaint in 5th October 2000 from Mrs Chaudhari (section 4).

125.  Resolution:       The disagreements could have been resolved through a different avenue eg by transferring to another hospital, which could provide equal paediatric facilities, and an impartial nursing and paediatric team who could facilitate communications.  This would have been acceptable to both parents and staff.


Further, the Paediatric team intended to allow the child to die and consideration must be made as to whether this EPO was manoeuvred for a “do not resuscitate” facility.




126.  Communication and Trust are the main components of good patient- doctor relationships. This is stated in many directives in the BMA and GMC.  Failure of these two most important entities leads to direct conflicts and mistrust of both parties. 


127.  From the beginning of the child’s birth, it is noted that doctors have been very negative regarding the prognosis of the child. In addition, this has caused the initial mistrust within the doctor-patient relationship, which is understandable in any “ reasonable person”. 


128.  This frustration of the parents with the medical professionals was compounded further by the non provision of an interpreter for Mr Chaudhari who felt “ shut out” of his own child’s care (interpreter was only offered after her letter of complaint in October 2000). This naturally has caused resentment. No professional has taken the time to explain the issues to the parents to regain their trust. 


129.  Throughout this report we have illustrated confidentiality problems, misconceptions of events by the staff, inaccurate details in the Emergency protection order and a severe lack of explanation to a mother who is understandably overwhelmed by the responsibility of caring for a child who has a disability compounded by doctors insisting that her child will die. 


130. Mrs Chaudhari has done her best for her child. On the 5th October 2000 she wrote her initial letter of complaint to the Chief Executive.  Following this matters escalated where nursing staff misconstrued any small action by her, intentionally or not. 

131. Mrs Chaudhari’s concerns were


* Harassment and Victimisation by staff

* Inadequate care

* She stated she was tired and required urgent assistance


She stated Letter to Mr Peter Murphy A24 from Ms Sandhana Chaudhari


“ I have been providing 24 hour care for my baby and have been subjected to harassment by senior managers “


131.  We note that the escalation of the complaints by the nursing staff increased after the letter dated 5th October 2000, suggesting victimization. Her concerns were not allayed.  There were numerous disagreements about


* who should control the CPAP machine/ Oxygen

* Only medical professionals should do the suctioning

* Saturations monitored inadequately

* The complaints from Mrs Chaudhari was that the ward was short staffed

* Senior managers would come to her unannounced

* Symptoms of irritation were shown in the nursing staff’s records. They became oversensitive to disconnections of CPAP (when Mrs Chaudhari had been trained to do this in SCBU).  No harm had come to the baby.

* Irritation of the nursing staff when Mrs Chaudhari requested food.


132.  During the weeks following the letter of complaint, it is clearly noted that the entries by nurses is specifically directed against Mrs Chaudhari, as opposed to comments on the care of the child.  These notes consisted entirely of personality conflicts as opposed to clinical content. 



133.  Medical Decisions were made without consulting or explaining situations to her and her husband.




2/10/00-Dr Shrisalker stopped all treatment without discussion with parents. This caused further conflicts. Normal practice would be that each drug would be removed as a staged process e.g. over a few days or weeks to provide a more controlled management of the child.


Step 1 Stop antibiotics

Step 2 Stop frusemide/spironolactone

Step 3 Trial off CPAP

All these steps were done together and this resulted in

a) Conflicts between staff and parents

b) Deterioration in the patient

134.  When a clinician is posed with this problem, they have a duty of care to terminate the relationship between the patient and themselves and ensure care is provided where there is objective approach with mutual trust and confidence. 


135. Irrelevant remarks were made in the medical records, which were done at the previous admission



15.45 hours

Mrs Choudry clicked her finger to Beatrice and saying baby needs suction now. This was said as she went on her way to answer the phone when Mrs Choudry came off the phone I spoke to her and requested that Beatrice shows her how to suction baby so that she can attend to her needs herself instead of clicking her fingers at nurses. Mrs Choudry is happy to undertake this task” D38 (name illegible)


136.  A few salient feature are noted from this statement


a) It is logical that a person should click their fingers to gain the attention of the nursing staff, as they were obviously busy.  Mrs Chaudhari merely tried to get their attention

b) Clicking fingers is a cultural method of getting the attention of someone, which is very common with Asians.

c) “ The sentence she can attend to her needs herself “ implies to any reasonable person that the nursing staff

i) Did not wish to be disturbed and were clearly irritated by the “ clicking of fingers “

ii) Instructed the mother in order to avoid the tasks that they should have been carrying out.

iii) Suctioning is a nursing task, which was left for the parent to carry out.

iv) Please note the misspelling of Mrs Chaudhari’s name on many occasions showing a lack of care for cultural names.  No allowance  was given to the different behaviours in cultural terms

137.  GMC Guidelines Good Medical Practice

Professional relationships with patients

1.2 Successful relationships between doctors and patients depend on trust. To establish and maintain that trusts you must:

* Listen to patients and respect their views

* Treat patients politely and considerately

* Respect patients’ privacy and dignity

* Give patients the information they ask for or need about their condition, its treatment and prognosis. You should provide this information to those with parental responsibility where patients are under 16 years old and lack the maturity to understand what their condition or its treatment may involve, provided you judge it to be in the child’s best interests to do so.

* Give information to patients in a way they can understand

* Be satisfied that , wherever possible , the patient has understood what is proposed, and consents to it, before you provide treatment or investigate a patient’s condition

* Respect the right of patients to be fully involved in decisions about their care

* Respect the right of parents to decline treatment or decline to take part in teaching or research

* Respect the right of patients to a second opinion

* Be readily accessible to patients and colleagues when you are on duty


138.  (21) You must do your best to establish and maintain a relationship of trust with your patients. Rarely, there may be circumstances in which you find it necessary to end a professional relationship with a patient. You must be satisfied your decision is fair and does not contravene the guidance in para 13; you must be prepared to justify your decision if called to do so. In such cases you should usually tell the patient why you have made this decision. You must also take steps to ensure that arrangements are made quickly for the continuing care of the patient. You should hand over records or other information to the patient’s new doctor as soon as possible.

139.  Comment:





a) Misleading and inaccurate information 

b) There was no independent management initiative to solve the problem

c) We therefore observe the scenario seen commonly between health professionals and patients when a relationship deteriorates.

d) Personal anger and irritation of the nursing staff thus resulted in misconstrued information

e) We cannot comment on their motive for this.

f) We then observe the domino effects of “hearsay” where the situation becomes entirely uncontrollable.




16th October 2000 (D8) Letter to Liz Pointing (Nursing Directorate) from Great Ormond Street (Andrew Hines)

Dr Colin Wallis, Consultant Paediatric Respiratory Medicine has agreed to take over the management of Suneena at Great Ormond Street.

16th October 2000

D7 Letter from Great Ormond Street (Mark Peters) to Dr Robinson – 18th October 2000  “ I explained that there is no suitable bed for this infant on the Intensive Care Unit at Great Ormond Street “


This would imply to the reasonable person that there was no bed available. 


b)    A20 Letter to Linda Perham 11th October 2000


“ The hospital arranged for Social Services to visit me unannounced at 6.15 yesterday. The latter accused me of getting in the way of nurses and doctors and threatened to take legal action against me “


c)    D7 Letter from Mark Peters 18th October 2000


“As explained at present there is no suitable bed for this infant on the Intensive care Unit at Great Ormond Street


142.  Due to the gravity of the situation and immediate requirement of transfer, the most logical course of action would have been to transfer the baby to another hospital. 


Each letter from parents requests for Sunaina to be transferred to another hospital for supportive care at an equal intensity and where there might have been an improved relationship between staff and parents. These requests were ignored.



144. Great Ormond Street was called for a second opinion instead on the 20/10/00 who advised the Emergency Protection Order, Judicial Review etc. There was no communication of this UNILATERAL change of plan.


      In essence, the EPO was used to obtain a DNR order by covert methods.

145.  IN CONCLUSION we state that misleading the parents and performing unilateral decisions contrary to their wishes is a breach of their fundamental rights stipulated by the Patients Charter and numerous directives.

Always feel that you can ask for information or advice as many questions and as often as you need. Ask the people you trust and who can give you the information you need."

Dr Una MacFadyen: Consultant Paediatrician.




Throughout the records, we have noted the inference of various staff who have questioned Mrs Chaudhari’s psychological wellbeing.  It must be stressed that to be “ upset” does NOT mean that one is psychiatrically ill. 


We have read the correspondence from Ms Chaudhari to Mr Peter Murphy (Chief Executive of the Trust) and clearly this is a lady who was concerned for the welfare of her child. She was exhausted at caring for her child as she felt due to her past experience she could not trust the staff. 


Her initial complaint to the Trust was on 5th October 2000 (A 24) which states her concerns regarding the


a) Attitude of the staff

b) Victimisation by staff


In this letter she details her concerns regarding the lack of care provided. 


We note that instead of dealing with these concerns, on this very day 5th October 2000 curiously she was referred to a Psychotherapist  (G14) by “ Ann Mahoney, Dr Shrilasker and Sr Angela “.  (Seen by Denise Cahill). We note that no referral was made to a psychiatrist at this point in time. Clearly there was no clinical need. 

147.        PAST EPISODES


Pam Hanton Health Visitor

Meeting minutes 5/9/00

KW 26


“ Main concern is mother herself- displays unusual behaviour – very volatile. Still registered with GP in Sidcup. Practice describes behaviour as normal for her.  No previous mental health problems. Sometimes wears florid coloured clothes and is “ hyper”. 


From this we infer that


a) Ms Hanton has no idea or concept of Indian clothing which are naturally florid in colour and is of no reflection on a person’s psyche. 

b) By these remarks Ms Hanton is insinuating that Ms Chaudhari may be  a manic-depressive or other serious psychiatric illness.

c)    We find Mrs Hanton’s subjective judgement to be based on her       Caucasian   outlook on life.

d)    In addition, Ms Chaudhari has no mental health problems; there has been no  psychiatric report on her.  There has been no requirement for this and therefore we can conclude that in the absence of this evidence, these remarks are defamatory. 


148.  We would hope that their legal advisors would consider an action for defamation due to these remarks that have labelled her throughout her time at King Georges. This has caused antagonism between herself and staff, which is understandable.  Without psychiatric evidence at the time, any questions of her mental health must be dispersed. We therefore state that subjective judgement and gossip by staff is not a diagnosis for a mental illness, which this lady seems to be labelled with.

149.  In our opinion, we feel that Ms Sadhana is an able and caring mother. In addition, given the rough terrain of her environment her reaction was not abnormal.  Any reasonable mother would have reacted in the same way.  To be UNHAPPY or UPSET is not a mental illness and should never be construed as such. 


Paul Hemmingway  - meeting 10th October, minutes on 19th October


  “ From the information provided, there is no indication that Mrs Chaudhari is suffering from permanent psychotic features. There are no clear reasons to considering sectioning Mrs Chaudhari at the current time “

Comment – Mr Paul Hemmingway should not have been party to confidential information regarding the mother.  The correct method of dealing with these concerns would have been to

i)    Approach her family with concerns

ii) Perhaps inform her own General Practitioner

iii)  No information regarding Mr and Mrs Chaudhari or the child should have been provided to this individual without the express consent of the family.

iv) Mr Hemingway was clearly asked to attend in order to consider “ sectioning Mrs Chaudhari “ which is an imputation of mental illness. This is therefore a breach of confidentiality and further evidence of possible defamation.

151.  In summary

Given that there is no past history of mental health problems, there is no psychiatrist report and there is no evidence of mental health symptoms we conclude that Ms Sandhana was victimised and harassed by the staff of King George’s possibly due to her complaint.  This is shown by the action of referral to a psychotherapist on the same day that her complaint was written to the Chief Executive. This form of behaviour demonstrates to us that for some reason unknown, Mrs Chaudhari’s remarks and complaints were threatening to the staff and hence to decrease her credibility regarding the complaints – the psychotherapist was called expressly implying that she is not in “ her right “ mind.   This is the only plausible explanation of referral to a psychotherapist on the same day as the complaint was made. 






a.    Confidentiality and Consent issues are paramount in medical practice.

b.    We have had grave concerns regarding these issues throughout the medical records.

c.    We have taken the liberty of providing the Department of Health guidelines on this subject (appendix 3) The British Medical Association and General Medical Council guidelines are identical. 



There are no documents during the Emergency Protection Order stipulating that the King George’s Hospital was implicitly instructed to carry out any treatment they wished. 

The Emergency protection order itself does not state any issues about consent


153.  Under these circumstances and the fact there is an absence of a court order making the child a ward of the court leads us to the conclusion that the consent remained with the parents and at no time were the parents consulted regarding the treatment after the 20th October 2000


We infer from the numerous documents requesting the transfer of their child to another hospital that they DID NOT have the authority to treat the child. 


154.  Any infliction of the child without the consent of the parents is an infringement of the child’s rights and in addition known as battery/ assault.


We note from Mr and Mrs Chaudhari’s statements to us that at no time did they consent to treatment of their daughter. Their legal advisors will no doubt be the best people to investigate this matter.  


155.  Dr Gillian Strawford, a medico-legal adviser at The MDU says:

Obtaining patient consent is integral to the doctor/patient relationship. Knowing when and in what circumstances a minor can consent to their own treatment is important for all doctors. A doctor who has taken reasonable care in the course of treatment, and is not vulnerable to an allegation of negligence, could still be pursued under the civil and criminal law for assault on the grounds that valid consent was not obtained.?


Throughout the case records there is no


* Documentation stating the issue of consent had been discussed

* There are no meetings where this was mentioned

* The family were not told or asked their consent

* There are no signed documents relating to consent


156.  Comment:   In our opinion given the status of the Emergency protection Order, it was highly negligent of the medical professionals and their legal advisors not to discuss the issue of consent. We cannot infer from the above that there was any implied or express consent that was obtained




GMC Guidelines


You may release confidential information in strict accordance with the patient’s consent, or the consent of a person properly authorised to act on the patient’s behalf.

158.  Examples of Potential breach of confidentiality

MEETING MINUTES HELD ON 10. 10.00 although it was curiously dated 19.10.00 under the name Maria Murphy.  This was the day before the application for court and we can conclude it was typed up for that purpose.


It must be noted that this meeting took place without the parents therefore any individuals who were not part of the immediate care were introduced without the consent of the parents.


a) It should be noted that vital personal healthcare information about the child and mother were disclosed at this meeting.

b) The individuals we identify who were asked to attend the meeting and who were not involved in the direct care of Sunaina Chaudhari were

1) Paul Hemmingway – who was not directly involved in the child’s care

2) Phyllis Abraham

3) Denise Martin

4) Teresa Walsh Jones

5) Maria Murphy


159.  Meeting 22nd August 2000


 A number of officials have been listed.  We note that the person Ileen Ashitey Child Protection Specialist has never been part of the original team. 

a) We have seen no recordings made by her

b) The family have never met her

c) The family have not consented to her being party to this meeting

d) We therefore state that to disclose information to this individual without first speaking to the family constitutes a breach of confidentiality


160.  We conclude therefore that any information disclosed to these individuals without the prior knowledge or agreement of the parents constitute a breach of confidentiality. These issues will be required to be investigated by the legal advisors.


161.  GO33 This is a letter dated the 25th October 2000 from Dr A Petros of Great Ormond Street to Caroline Harrison, Solicitor of King Georges Hospital Redbridge


Great Ormond Street is an independent Trust and Dr Petros possessed the data for Redbridge Trust patient. This information was disclosed to a solicitor without the express consent of the family.


Dr Petros works is an independent Trust and was asked to provide an independent opinion of the patient for appropriateness of intensive care.


It should be noted that at no time did Dr Petros speak to the family


At no time was the consent of the parents sought to examine the child


All decisions made were unilateral based on a skewed perception of the clinical situation and disregarding any opinion from parents


At no time did he obtain the consent of the family to disclose matters pertaining to the family to a third party namely the solicitor at the Trust, a person who was not directly responsible for the care of the patient


The Emergency Protection Order does not waiver the requirement of consent or confidentiality for disclosure of medical details.


We observe that medical details of the patient has been disclosed without the consent of the parents.


We note that his own colleague Dr Goldman who is consultant in palliative care medicine advocates the following



“”Every child and family is unique and bring their own beliefs, culture, coping skills and communication style when they are facing these difficult and terrible situations. Our task is to try to work with them to try to find a way forward that is firstly in the best interest of the sick child.”

 ( received in an email to us dated 7th June 2001)


Ann Goldman

Consultant in Palliative Care

Great Ormond Street Hospital

Great Ormond Street

London WC1N 3JH

phone 0207 829 8678

fax 0207 813 8588







All decisions in the case of this patient has been governed by the assumption that she was dying and no further intervention would be of benefit to her. 

a) It should be noted that despite the assumptions that she would die

i)    Before birth

ii) At birth

iii) After the diaphragmatic hernia operation

These predictions were proven wrong.

163.  This leads us to conclude (and should have led the same clinicians to conclude) that this child did have the capacity to maintain life and was stronger than their medical opinion assumed. Logically, the probability of death would have been at its maximum ie highest expected mortality, at the time of the surgical intervention.  Risks of surgery and post-operative death is additive as extra stress occurs to the infant.


164.  This surgical intervention did not cause the death of the individual.  In fact on 31st July 2000 she was well enough to return home with her parents.

165.   Throughout the medical records and expert witness reports we note that there are many assumptions made as to the cause of death.  We would like to provide an outline of each condition, which this patient had and consider the potential likelihood of death.


13th October 2000 Letter from Dr Shirsalkar to Professor Dinwiddy stated (D10)


1) Trisomy 18 Edwards Syndrome

2) Repair diaphragmatic hernia at GOS on the 7th day of  life

3) Chronic lung disease oxygen dependent

4) Small VSD , clinically closed

5) Posterial fossa cyst on CT scan

6) Bilateral hearing loss

7) Perinatal gastric perforation  operated upon at the same time as diaphragmatic hernia

8) Group B Strep septicaemia in the neonatal period


166.  We will now consider each condition in turn to assess if the direct cause of death can be attributable to one or more medical problems.

Trisomy 18 discussion as above. This is not a disease or an illness – it is a condition that affects each individual differently, with a spectrum of associated congenital conditions of other organs.

167.       Left Congenital Diaphragmatic Hernia 

From We 4 and Professor Weindling Page 3

“ Congenital Diaphragmatic Hernia (CDH) is also a very serious condition, associated with significant mortality and morbidity. The incidence of congenital diaphragmatic hernia is 1 per 2-4000 births. It is a developmental abnormality and is due to a failure of the diaphragm to close correctly. Surgical repair is usually fairly straightforward and the serious clinical consequences of this condition are due to a failure of development of the lung and its blood supply on the side of the hernia. The earlier the diagnosis is made (as in this case), the more likely there is to be significant impairment of lung growth. The small lung is called “ hypoplastic” and the condition is known as pulmonary hypoplasia. As in Sunaina’s case, pulmonary hypertension is not uncommon complication of this arrested pulmonary development”


a) Mr Pierro of Great Ormond Street 1.6.00 successfully carried out the diaphragmatic repair


b) The complications listed are

* Gp B streptococcus ( Blood Cultures 25/5) which was again successfully treated with Ampicillin and Amikacin Go18

* Large left pleural effusion which was successfully drained ( GO17)

* She was discharged on the 8th June 2000 to be followed up locally

* The discharge summary which shows that Sunaina was in a fairly good state physically ( GO 23-25)

* Successful repair of a Congenital Diaphragmatic Hernia increases the probability of survival.

c)  Scientific references mortality


Perinatol 2000 Dec;24(6):418-28

Congenital diaphragmatic hernia: where are we and where do we go from here?

Muratore CS, Wilson JM.Department of Surgery, Children’s Hospital and Harvard Medical School, Boston, MA 02115, USA.

“CDH survival is close to 90% at most advanced centres.”

( Great Ormond Street is classified as an advanced centre)


d)There are complications of diaphragmatic hernias. The most notable stipulated by Professor Weindling is pulmonary hypoplasia.  

We would like to discuss the condition of pulmonary hypoplasia and the extent to which this affected her.




169.  Pulmonary hypertension is caused by pulmonary vascular resistance secondary to various lung pathology. This could be


ANATOMICAL – i.e. actual physical size is small

PHYSIOLOGICAL – problems lie in the actual physiology of the lungs


170.    HYPOPLASTIC LUNGS are lungs that are anatomically too small to sustain     life and would result in early death.  This patient survived until 5 months.    


171. She was oxygen dependent but only required modest oxygen (30-40% FiO2) and thus did not have severe anatomical pulmonary hypoplasia.


172. She did have pulmonary hypertension; the degree is difficult to accurately predict. The treatment for pulmonary hypertension is nitric oxide, vasodilators and oxygen. The practical recommendation is to maintain high oxygen levels (98% saturation) which minimises the pulmonary hypertension and reduces the risk of heart failure (cor pulmonale).


173. The patient did not have significant pulmonary hypoplasia as she survived diaphragmatic repair (commonest cause of death is due to pulmonary hypoplasia).


174. This provides evidence against anatomical reasons causing pulmonary hypoplasia.


175. We provide further evidence by the following :-


Professor Risdon’s Post-mortem report states ( P40)


 “ The bronchi were congested. The left lung weighed 40.7g and the right lung 33.9. 

(Weight of child 4750g)


i)    There is no mention of pulmonary hypoplasia in the PM report

ii)   Reference for lung weight suggest that this is not within the hypoplastic range



176.  The most probable cause of Pulmonary Hypertension is thus physiological in nature


* This is a reversible condition – TREATABLE

* Has a much better probability of survival

* Reversibility is with optimising oxygen


177.  In conclusion, Professor Weindling’s assumption of “ As in Sunaina’s case. Pulmonary hypertension is not a uncommon complication of this arrested pulmonary development” is inaccurate as


* There is no scientific evidence for that the lungs were indeed hypoplastic. 

* The natural history of severe lung hypoplasia is very early or immediate death at birth. 

* Pulmonary hypertension is not in this case caused by arrested development of the lungs – it is caused by physiological changes in the vasculature.


178.  CHRONIC LUNG DISEASE  - evidence that this did not cause sudden death


a) Professor Risdon’s Pathology report on the 30/10/00


“ Normal nose and nasopharynx. Normal larynx. The trachea contained a little food material. The bronchi were congested. The left lung weighed 40.7gm and the Right lung 33.9. The pleural surfaces of both lungs were pitted and fissured. On section the parenchyma was congested and a little white material was expressed from small airways on their cut surfaces.



b)    Histology


There is a focal thickening of alveolar septa and many terminal airspaces are markedly dilated. There are also areas of collapse and most airspaces contain foamy, and some iron laden macrophages. Pulmonary arteries and arterioles show changes associated with pulmonary hypertension.


We infer from the anatomical examination that

* Lung changes seen were consistent with inflammation and pulmonary hypertension, or chronic lung disease

* This histology is not consistent with severe or terminal lung disease

* There is no evidence of profound acute lung infection (no bronchopneumonia) – consolidation or neutrophilia leading to sudden death


b) CLINICALLY during October 2000 admission


* All blood gases were within normal range of acid status (normal blood pH 7.44 compensated). There were no documented uncompensated raised PCO2 levels throughout her stay at King George’s Hospital.


* There was no progressive increase in oxygen requirements (ie above 60% FiO2), this would be evident if lung disease was becoming worse


* Chest X-rays show good lung inflation in both lungs (X-rays taken on 25/9/2000  and 14/10/2000 showed no difference in lung opacity)


* All blood culture results and Virology was negative – no positive infection identified

179.  Comment:

Comparing her medical condition, we would infer that the patient was no worse when she was discharged home on 25/9/00 than on 14/10/2000, six days before the Emergency Protection Order was served. 


The X-rays do not show any signs of infection nor the classical changes of severe chronic lung disease.


Professor Risdon lists that all Microbiology was negative eliminating infection as a cause of exacerbation of her lung disease.


We therefore conclude that although there was chronic lung disease and pulmonary hypertension, these medical conditions were clinically treated and hence are not the cause of immediate death on 26th October 2000.

It certainly should not be a reason for withdrawing all treatment.

180.  CARDIAC COMPLICATIONS – Small Ventricular Septal Defect was not clinically significant

G024   There have been no worries from the cardiovascular point of view. The VSD is considered small… She has been reviewed by a cardiologist and it is not thought that any intervention would be necessary.

D72 Cardiology Opinion

“ I have discussed with mum that the VSD is not affecting the baby at this stage “


“This is now clinically closed ““ (summary dated 25th October 2000 by Dr Shirsalkar

      “The heart sounds were normal” ( Dr Petros, 0515 25th October 2000 Great Ormond Street


181.  Comment: We therefore conclude that this heart anomaly alone would  not have contributed to immediate death.  It was clinically closed and thus functioning as a normal heart.

We thus state that this is not a contributing cause of her death.


PM and CT Scan of her brain showed

Large cyst in the posterior fossa (back of the brain) – cerebellar hypoplasia (= small or underdeveloped cerebellum)

a) This congenital lesion would not have directly caused the death of this child

b) This abnormality causes neurodevelopmental delay (morbidity) but is not a contributory factor in immediate death .


183.  Central Apnoea

Although it is known that Trisomy 18 children are prone to central apnoeas, there was no previous documented evidence that the patient had episodes suggesting this condition by either the nursing or medical notes.


Usually, the pattern would be repeated episodes of apnoea before a profound or solitary one leading to death


184.    WEIGHT – its significance to well being


a) ” The capacity to grow and develop is the essence of childhood “ (Oxford Textbook of Specialities p184)

b)  Weight gain is a prime indicator of progress of a child

c) A child who is dying would rarely gain weight

d) This child did not show any evidence of failing to thrive

e) This is plotted on Centile charts. The figures at the end of each of the curves refer to centiles. If a child is growing along the third centile this means that only 3% of children from a healthy normal population has a growth rate as low or lower than such a child.

f) It should be noted that not all-ethnic populations are the same.  While such a child can be said to be abnormally small if he is a well fed Caucasian, this need by no means be the case if he is of Asian extraction.

g) Weight gain (this can be seen in Personal Child Health Records) where the weight was seen to increase from 2.64 kg to 4.70kg. This is elucidated by increasing ( linear ) graphical representations

h) “On examination we found Sunaina well below the 3rd centile for weight and length and is very much further below the 3rd centile for head circumference” (A26 Great Ormond Street).


There is no record by Great Ormond St of Sunaina’s head circumference or growth


185.  Please find enclosed a TABLE SHOWING THE INCREASE OF WEIGHT

Taken from Ch9



Wt ( kg)


10 weeks



10 weeks



11 weeks



12 weeks



13 weeks






13 weeks



14 weeks






15 weeks






16 weeks






17 weeks



18 weeks



18 weeks



19 weeks






19 weeks



20 weeks



20 weeks



20 weeks



21 weeks



21 weeks



21 weeks



21 weeks



22 weeks



22 weeks



22 weeks

4.69 d398


22 weeks

4.66 d397


22 weeks

4.66 d396

Weight at death 4.740g

Professor Venezis (1/2/01) states  PM report “ The body was that of a well nourished female infant “


186.  We infer from this table that this child was infact growing well while she was in the care of parents.   She may have been below centiles but her growth compared with Trisomy 18 patients is above average.  Centiles is the distribution of weight in the normal population.  This patient had Trisomy 18 and was also an Asian should be compared with a similar population to her (i.e. similar characteristics)


The medical reviews following discharge in August/September 2000 were favourable. SC showed signs of development and growth

a)    D13 Letter from Dr Shirsalkar to Dr Suri on 18th September 2000

“ She has done very well since discharge home. Initially she was being fed hourly but now she is on continuous 24-hour pump feeds and seems to be coping well with this.

In the clinic today, she was fixing and following

b)    Letter to Dr Shrilaskar to Fiona Young 15th August (D17)

 “This child has been gaining weight slowly since coming home “

c)    Letter to Mr Pierro from Dr S Alexander 20th July 2000 (D18)

“ She seems to be doing well “

d)    D126 19.6.00  “ Suniana a lot active, responding to touch and conversation”

      D128 20.6.00  “ Active responds to stimulation “

D148 30.6.00   “Baby has recovered well from recent infection and is gaining  weight” 

      D183  24/7/00  “ Gained 10g weight “

D216 1.10.00 1400 “ Cardiovascularly stable – heart rate 150-155pm, good colour, responsive, apyrexial, resps 40, CPAP reduced by mum from 55% to 30 % currently with saturation’s maintained at 95-98 %. All medication given –mum has passed oral gastric tube


e)    Medical Report by Sarah Luke 5.9.2000 Consultant Paediatrician



Presently showing good play skills fixes and follows well. Loves moving toys, has been focussing for the past 2 months, smiles appropriately to dad though this was obviously late starting about 2 weeks ago. Loves people and sustained focus developed a week ago. She is now beginning to track.


Communication skills

Started cooing approximately 2 weeks ago, prior to that there was minimal vocalisation.

188.  Comment: Throughout the records although Sunaina was developmentally delayed, she was showing interaction with her family members. In addition, she did show some development and progress.

We note from the Great Ormond Street review there is no record of communication with the family and neither are there any details of any progress in development from the community paediatrician.


Video evidence was supplied to us before and after the EPO. We observed footage of the child on the 1st July 2000, 27 July 2000, 20th October 2000 and 25th October 2000.

The following observations were made

a) Sunaina had visibly gained weight from July 2000 to October 2000

b) There was good family bonding . The father and mother were very affectionate and caring towards their child .

c) We note that in our opinion the child observed on the 25th October 2000 SHOULD NOT HAVE BEEN PROVIDED WITH A DNR notice. The visible evidence supports the conclusions reached above. The child visibly interacted with her family. There was fixing and following and good head control. The child was seen to sit up for a few seconds on one occasion on the 25th October 2000. Her colour was very good and she did not seem profoundly  distressed at all.  This evidence should be used in a court of law to elucidate the fact that this baby was clearly NOT dying. She seemed very alert and reactive to her own environment.

d) It was observed that on the 25th October 2000, the family were very unhappy.  The father was very tearful and the mother looked visibly tired. We suggest that this is evidence of the disastrous consequences of the authorities on the family causing them unnecessary distress and emotional trauma.




“We are of the opinion that Suniana’s condition is sadly futile. We would strongly recommend your “ do not resuscitate “ decision in this case”

GO31 25th October 2000 Great Ormond Street

192.  This  “do not resuscitate” decision was never discussed or agreed with the family

Please refer to the appendix below regarding accepted procedures and guidelines when taking a DNR order to maintain appropriate ethics.

193.  Evidence 1  Insensitivity to Religious Beliefs:  DISCRIMINATION OF ASIAN HINDU PATIENT      

We refer to an article written by Dr Andy Petros and his colleague Dr David Inwald BMJ 2000;320:1266-8 .

Here they both discuss the ethical dilemas of a Jewish patient.

“ Families should not be pressurised into consenting to withdrawal of care”

Similar to this case, the Jewish family disagreed with the DNR order. It should be noted that this was a case of brain stem death. The treatment in this case was indeed hopeless. Nevertheless, both authors state


“ The intensive care team advocated withdrawal of care in line with the recent Royal College of Paediatrics and Child Health guidelines. However, this was in conflict with the family’s wishes. They had consulted their Rabbi, who insisted that Jewish law would not allow treatment to be withdrawn.


“ Our care plan

After discussion with the rabbinical authorities, a plan of care was agreed in line with Lord Jacobovits recommendations. No action was taken to hasten cessation of the heart beat.



“ In these unusual circumstances it is more important to respect the cultural traditions of the family that to free a bed in the intensive care unit”

194.Comment: – when comparing the two cases we note the following



a) This HINDU family were not involved in the decision for DNR

b) There was no discussion with Hindu Priests to come to a compromise in the light of the family’s religious affiliations and views. In the view of Hunduism, to withdraw treatment as in Jewish law is murder.

c) A decision was taken which sentenced a Trisomy 18 child,  who was better  physically, then the Jewish child in discussion.  We suggest that this mode of unequal treatment is discriminatory.


Excluding family from discussions nor seeking their consent

d) the decision was made unilaterally

e) No consent to see the patient was taken from the parents with a view to a “ do not resuscitate decision”. The parents were under the impression; their child would be transferred to another hospital as they had requested.

f) Appendix 6B provides a summary of the current BMA guidelines in light of the Human Rights Act 1998



It is recognised widely that medical decisions relating to children and young people ideally should be taken within a supportive partnership involving patients, their families and the health care team

g) It is not disputed that the risk of group mortality in Trisomy 18 is high. Nevertheless, as an individual, she showed evidence of the following clinical characteristics

      She was developing neurologically as stated in the previous section

ii) She showed a good gain in weight

iii) All her saturations were normal on CPAP or nasal oxygen.  All other observations were stable

iv)      We see that even in death she is observed to be a well nourished developing individual. All blood results were relatively normal. She was not in organ failure.

v) Dr Shirsalker had made the decision to send her home on the 25th October 2000 with review by the home care team. If this was so, in his clinical opinion she was not dying. 

vi) If it was viewed by the clinicians that “ she was dying” then Dr Shirlasker would not have made the decision to discharge her but would instead have provided “family centred palliative care”. Clearly there is a conflict of opinions between the clinicians with Dr Robinson and Dr Petros advocating palliative care and Dr Shirsalker considering discharge home on oxygen and maintenance.

vii) Her chest x-rays for September 2000 and October 2000 were identical. There was no DNR on her records in September 2000 but October 2000 showed a different decision

viii) She required CPAP and Oxygen but functionally there was no cause that would result in her impending or sudden death


195.  We therefore stipulate that she may well have died at a later stage but she was not dying in that week.


196. The concept of futility is relative. There are individuals in persistent vegetative state where clearly there would be no benefit in resuscitation where we would advocate withdrawal of treatment and DNR policy.


197.  In this instance, a decision without considered discussion with the family to form an informed decision, fall below the standard of care expected of a practitioner


198.  We state that withdrawal of treatment and DNR in these circumstances under a CARE ORDER, without the parent’s involvement or agreement, is not justified.  Given the good condition of the child, she was not “dying” as  evidenced by the observations made by the staff and doctors at King George’s Hospital.  This raises Human Rights issues regarding Article 2 ( Right to Life)





Throughout the medical records, there has been a lack of communication and hence a management plans for the child in question.


There is incredible confusion displayed when ascertaining the actions of the clinicians and King George’s Trust: 


1) Emergency Protection Order was obtained claiming to “protect the child from harm” from the parents when the Trust and clinicians had no wish to maintain her life.

2) Although in the Paediatricians’ opinion there was a “ risk of significant harm” from parents, this has no basis as evidenced above.


3) Great Ormond Street was contacted who provided a ‘Do not Resuscitate’ Opinion without seeing the patient on the 20/10/00. Later that week, the team did visit and verified this decision on the 25th October 2001.


4)  The Chief Executive has written to the family stating that a “do not resuscitation” policy was going to be followed. A4 Letter dated 24th October 2000


“In the light of this, the clinical decision is that should Suniana’s condition deteriorate, we will provide palliative care, but we will not provide intensive care, including CPAP or ventilation or take steps to resuscitate her.


5) No discussion was made of these events with the parents concerned

6) The parents assumed that a “ do not resuscitate” order would be followed

7) Judicial Review to instigate these proceedings were applied for during the week of the Emergency Protection Order stating the requirements for withdrawal of treatment and DNR

8) On the 25th October 2000, Dr Shirsalker writes a care-plan with the intention of discharging the patient contrary to the intentions of the Trust

9) On the 26th October 2000, the team attempt to resuscitate the patient contrary to the stipulations of the Chief Executive in his letters to the family.


200. In conclusion, the paediatric team and the Trust displayed gross confusion.

i)        They failed to advise the family adequately.

ii) This misunderstanding led the family to believe that “ the child would not be resuscitated”. Yet finally this child was resuscitated.


201.  We question the reason why she was not provided with the identical decision in May 2000 given her mortality at that point was the highest at approximately 99% given she had a diaphragmatic hernia, respiratory distress, low birth weight.


202. Prognosis was better having survived a full term pregnancy, a normal delivery, an operation on the diaphragm, a second complication operation on the stomach, progressing in weight and developing slowly but better than expected for a Trisomy 18 child. 


203. The DNR decision and withdrawal of treatment was placed when she was in a much better clinical condition and thriving. There is no evidence of acute or chronic deterioration.  Thus, the DNR decision was not rational at that point.


204.  We conclude the consultants, the management and the staff failed in communicating between themselves and the family and acted unlawfully and  unprofessionally in the clinical decision-making process.






Letter from Dr Shirsalkar to Dr Suri (GP) 18th September 2000  (D13)

Medication Frusemide 1ml OD

                   Spironolactone 0.35ml OD

                    Ranitidine 0.2ml tds


Noticed Ranitidine does was 30mg on drug chart  (0X dose) It had been given on two earlier occasions.  Clinical incident form complete C Ellingford

a) Why did pharmacy not notice this?

b) Why did the admitting doctor not notice this

c) Why did the consultant not notice this

d) We would class this as a medical error although no harm came to the child. Due care and attention of the charts was not taken from admission.



205.  We conclude the consultants, the management and the staff failed in the ethical decision-making process.  Without understanding the complex issues involved of consent and information-giving, they falsified medical details when obtaining the EPO, not for the protection of the child, but only to exclude the parents who were a source of irritation to them.   The confusion in the ethical decision making process and promoting unnecessary legal measures with false information is a gross injustice to the practice of medicine today.







We have established from the above discussion that there are many misconceptions about the cause of immediate death of this child. Section 2 illustrates the chronic conditions which in the view of the excellent levels of observation results recorded was not the cause of death in that given time frame (20th October 2000 – 26th October2000). These are summarised below


a) All her saturations and observations were normal

b) She was seen to interact with staff

c) These are not the actions of a dying baby

d) Her chest Xray for October 2000 is better than September 2000

e) Her diaphragmatic hernia had been repaired therefore there is no morbidity from this

f) Her VSD was clinically closed according to reports from various clinicians

g) Cerebellar cysts – does not cause death – it causes disability


207. All chronic conditions can be exacerbated by an initial insult which places greater demands on the human physiology eg when running, an asthmatic condition may deteriorate due to the requirement for a greater respiratory effort or angina pain may progressively worsen on exercise due to greater cardiac output.


208. To deduce the most likely cause of death on the 26th October 2000, one must look at the overall condition of the child within the time frame of death. It is not disputed that Trisomy 18 was a life-limiting condition nevertheless in our opinion it was very unlikely that she was dying  in that time frame. Our reasons for concluding this is based on the evidence presented below.


1) The child did not worsen during the week starting 20-26th October 2000. She showed good saturations and she was not on CPAP. All observations were very good and within normal limits ( please see observation charts for 20-26th October 2000)

2) There was no evidence of infection apart from an isolated temperature rise of 38 C. The Post Mortem report showed that all blood cultures and virology were negative. Histology of the lungs did not show profound infection eg consolidation.  In the absence of this we cannot conclude that an  infection precipitated her death.

3) The child had showed an improvement during that week (eg her oxygen had been turned down) and she was not on CPAP.


209.  To discuss the events of the 26th October 2000, one must list the events in detail on that date.


Our reasons for the cause of death are based on the evidence before us. We offer the most likely

cause in the clinical environment given the circumstances.  Sunaina Chaudhari was not terminally ill. We agree that her longevity was shorter than the average child was but we dispute the fact that she was “ dying”in October 2000. There was no indication that she would die on that particular day of 26th October 2000.


To deduce the cause of death, we wish to take this opportunity to list the events of the 26th October 2000


 210.  EVENTS OF THE 26th OCTOBER 2000 ( D387 –D394)




Mrs Chaudhari Phoned

Phonecall taken by SN Razaram

Enquiry “ How many litres is Sunaina having. 1.5L of oxygen and the saturation was 95%



Tolerating feed well


Oxygen has remained between 1-2 litres maintaining saturations mid 90s


Sats 95% on 2Litres

From 0800 oxygen turned down o 1.5 Litres

Temperature was 37.8degrees C




Actions taken due to temperature

* Baby quilt was removed and window opened

* Baby washed and changed by Student nurse J Marks


NB This entry was not written at the time which is very unusual



Temperature 38 degrees C

Calpol 60mg given

Dr Rager was informed (8278)

Dr Rager then said he would discuss it with Dr Sam (Consultant)


* Given KCL and Frusemide Via Oral gastric tube

* Dr Sam came to see Suniana

* “blood cultures and bloods should be taken and antibiotics commenced

* Held her for 10 minutes

* Dr Hancox bleeped at 10.15


NB baby woken up as soon as she settled to sleep.



Dr Hancox tried to bleed Sunaina

“On examination, awake crying, moving limbs, slightly pale, not cyanosed, mild dyspnoea noted. Chest Good Air Entry

Attempted X2 cannula without success


Dr Solebo came into the room to assist

O/E Pale but not cyanosed, breathing but dyspnoeic.

NB there is no evidence that the oxygen which was at 1.5 litres was turned up . Given she was dysnoeic this would be the “ reasonable practice”

There is no saturations noted at this time and in addition no observations were taken.  D406 The last saturations were done at 10.20 and not 10.53 when she was notably breathless. Her last notes Saturations were 91%.  At this point the oxygen should have been increased to 2L

There was no nursing staff to make observations



* IV Cannula attempted., first attempt failed

* 2nd Attempt successful but Sunaina became apnoeic, eyes ……. And stopped moving

* Airways cleared of secretions

* Given O2 by bag and valved mask

* No response for 1 min

* Called in Dr Sam and I then decided to intubate

* 3.5 gage with good air entry

* Commenced CPR

* Given 0.5ml 1:1000 via ETT

* Given 3 doses at 3mmols

* Continued CPR and manual IPPV

For 15 mins




Dr Solebo called nurse to the room


Dr Solebo Intubated


Decision made to stop CPR by Dr Sam

After this Sunaina was

“ immediately extubated and oral gastric tube was used to withdraw gastric contents

Oral gastric tube was then removed

Sunaina was cleaned and dressed


Family parted from child

Whereabouts of the body was uncertain during this time

211. Many hypothesis regarding the cause of death have been presented. We wish to discuss the following possibilities of death which have been presented by specialists and the family


a) Subendocardial necrosis

b) Central Apnoea

c) Drowning by milk

d) Apnoea induced by multiple venflon insertion

e) Potassium


We wish to deduce a step by step format that elucidates the most probable cause of death.


212. Factors




From the above it can be noted that the collapse occurred whilst cannulation was taking place. It should be noted that the process of cannulation causing stress (and pain reaction) to a child is widely listed in the current research.


Many papers have listed that there are greater demands placed on the respiratory rate, the heart rate and oxygen saturations.

a) Singh H et al Comparison of Pain Response to Venepuncture Between Term and Preterm Neonates. Indian Paediatrics 2000;37


“ Mean heart rate increased during the procedure in all the groups…

… was a rise in respiratory rate during the  procedure in all groups”

…. All newborns in three groups experienced a significant oxygen desaturation during the procedure. 


b) Potentially injurious hypoxia occur even during essential routine care procedures

* Long JG , Philip AGS. Excessive handling as a cause of hypoxaemia 1980;65:203-205

* Craig KD, Whitfield MF .Pain in the neonates . Behavioural and physiological indices Pain 1993; 54:111


In a child with chronic lung disease, additional measures would need to be in place due to the extra physiological demands placed on the child merely by intervention by cannulation.

We observe that the child was saturating well and indeed all her observations were all normal overnight until 1053 on the 26th October 2000.  This does not indicate a “dying baby”.  In a dying baby we would expect saturations to be much lower, a dependancy on CPAP and high oxygen requirements and clinical evidence of severe respiratory distress (ie recession and tachypnoea). 


After cannulation it is noted that the child was “ breathing but dyspnoeic “(D391).

213. Comment


a) There were NO saturations noted that that time which is clinically negligent

b) There were NO recording of any observations during this time

c) Normal practice would be that the child should have been “continuously monitored “ while cannulation was occurring.

d) There was NO nurse to observe and monitor the child

e) Despite the note above, the doctors DID NOT increase the Oxygen to 2L or above if needed for the distress they witnessed, which is normal practice.


Given the above we can conclude the child was not monitored and precautions were not taken to prevent a collapse. This would be termed “ reckless” and lacking in their duty of care to ensure the safety of the patient. 


214. Following these events the child became “ apnoeic” (D391). This is defined as an absence of breathing.  We follow the logical path of dyspnoeic then apnoeic which means the patient was breathless then had an absence of breathing. This clinical observation from the records leads us to conclude that a respiratory arrest occurred as opposed to a “ cardiac arrest”.


215.  The proximity of the cannulation to the collapse was approximately 2-3 minutes. Given the trend of normal observations and no sign of deterioration UNTIL cannulation, a linear curve relationship would lead us to conclude there were no other intrinsic factor that caused her IMMEDIATE death.


216. The close proximity of the cannulation to collapse leads us to an extrinsic factor which exacerbated her chronic condition. 

For example, in an adult running would exacerbate angina in an individual resulting in greater physiological demands on the body – thus presenting as chest pain. 


217. This extrinsic factor is the INSULT CAUSED BY CANNULATION. It should be noted that cannulation occurred approximately six times.


This is listed in the Post Mortem Report “ There were three needle puncture marks with small areas of surrounding bruising on the dorsum of the left hand and three similar needle puncture marks on the dorsum of the right hand”


218. Comment 

In the light of the patient’s condition and warning signs after a few cannulations eg dysnoea, the cannulation should not have been continued.


The patient had been directed for palliative care after instructions from Intensivists.


Furthermore, given that the Consultant and family were in court that very morning for consideration of Emergency protection Orders, any interference should have been defered until outcome of EPO extension or discharge.


There was an isolated temperature of 38C (ie temperature was not constantly high) and the child was not obviously toxic.  Appropriate measures to reduce temperature eg mild tepid sponging and calpol, was given at about 10am but this was NOT given time to work.   Her temperature usually subsided in the past.  ( D323)

0405 “ Sunaina spiked a temperature of 38degrees C. Given Calpol with good effect “

NO BLOOD CULTURES WERE DONE ON THIS OCCASION as the natural characteristic of this patient was an occasional spike in temperature. We conclude therefore that the urgency of blood cultures was not indicated given there was no indications of sepsis.  In addition, other routine measures were not done eg dipstick of the urine .


In view of this, Cultures or Cannulation SHOULD NOT have been done given the mere fact that it was the intention of the staff to discharge the patient home following the hearing that day.


The more prudent approach would have been to observe the patient further and if her temperature had not subsided, to provide regular calpol.


All PM report cultures were negative which thus obliterates the urgent need for cultures and cannulation.



This would have definitely caused the child distress increasing physiological demands phenomenally.


The normal practice and options would have been to attempt 2 or at most 3 venepuncture (needle pricks) attempts, and return later after the child became more settled.  Checking oxygenation then progress after stabilising the patient should be done by any reasonable doctor.


219. In this child however, her PHYSIOLOGICAL DEMANDS were not met by the provision of adequate oxygen either intentionally or unintentionally. 

Either, the quantity of Oxygen supply was inadequate for her, thus leading to a profound hypoxia or the possibility exists that the oxygen via nasal prongs had been dislodged, causing the same result, but there is no documented evidence of this. 






222. Therefore, given the close proximity between the time of sudden collapse, which related to the venepuncture, the probability that this is the direct cause of death is extremely likely.  This has a greater probability of 95%, in the absence of deterioration of any of other factors as listed above.  









a) Lack  of adequate observation

b) Inability to increase oxygen when required

c) Inability to gain consent from the parents in the event of cannulation (interference)




The fundamental rights of any person in the United Kingdom is required to be protected at all costs.  With the advent of the Human Rights Act 1998, this case raises a number of breaches in Human Rights legislation commited by the authorities.


This family has been denied their rights to be with their child for one week ( 20th October 20000- 26th October 2000) due to a fraudulent Emergency Protection Order which in our opinion was obtained due to Redbridge Trust’s irritation with the family. Irritation and convenience is NOT an indication for an Emergency Protection Order.  False information was provided to the Justice perverting the course of justice for the Trust’s own convenience.   There is no doubt that this hospital was inexperienced in dealing with culturally sensitive issues and more importantly the care of a Trisomy 18 child.  In our opinion, we note that throughout the records, there is mention of “ short staffing” and hence we conclude that Redbridge NHS Trust have been unable to cope with the demands placed on them. The convenience to obtain an Emergency Protection Order was for their convenience in obtaining a Do not Resuscitate order and also decreased demands from the family.


The following officials and staff have failed in their duties to protect a vulnerable patient .


a) Chief Executive Mr Peter Murphy

* Failure to protect Mrs Chaudhari from harrassment and victimisation by the staff due to her complaints

* Failure to provide a resolution and compromise for the family

* Failure to provide accurate information eg he wrote to the family about the DNR management when no court order was obtained.

* Failure to deal effectively and investigate the complaints through a complaints procedure.

* Failure to ensure an urgent transfer to another hospital in an emergency where there was a severe relationship breakdown

b) Dr David Robinson

* Failure to provide the family with a resolution

* Failure to terminate his relationship with the family when a relationship breakdown occurred

* Misleading Great Ormond Street regarding information about the child

* Collusion for innacurate  information for the Emergency Protection Order.

* Lack of communication with his team causing serious confusion


c) Dr Anand Shirsalker

* Providing false and misleading information regarding oxygen effects on infection .

* Collusion with provision of innacurate information for the Emergency Protection Order

* Confusion in his decisions to discharge a child while in the meantime agreeing to a Judicial Review.


d) Dr Andy Petros and Team

* Failure to communicate with family regarding DNR decision

* Unilateral decision taken place

* Failure to interview family

* Collusion with false information provided for EPO. Lack of duty of care to check and verify information provided

* Inccurate and misleading information provided eg Oxygen and pulmonary fibrosis etc

* Breach of Patient Confidentiality to another Trust’s solicitor without express consent of the parents


e) Anne Mahoney and Staff at Clover ward ( who will need to be interviewed)

* Inaccurate information in medical records

* Harrassment/ Victimisation of Mrs Chaudhari and family


f) Maria Murphy

* Failure of assessment

* Failure to communicate information with family

* False information for Emergency Protection Order


All staff need to be interviewed to ascertain liability of  each individual more accurately.  In addition a full investigation into these matters is required which to this date has not been done.


We conclude that the care of this child has been substandard . There has been severe communication difficulties and a relationship breakdown. The BMA publication “Consent , Rights and Choices in Heathcare for Children and Young People states ( page 5) “ in practice however, secrecy , bad communication and patient’s suspicion that important questions are being avoided can contribute to fear and anxiety”. Dishonesty undermines trust and can create a barrier between patients and health professionals.


Due to this we observe the evidence of sheer malice in making one sided decisions about a child without the involvement of the  family.  The decisions were detrimental to the best interests of the family. We note the meaning of “ best interests has been abused and misused throughout the records.  The BMA publication on “ Consent, Rights and Choices in Health Care and Young People states “ We seekl to demonstrate that patients’ best interests are not only defined in terms of physical benefit – vital as that usually is – but also in terms of what best accommodates their other needs. 1.2 states that “ Regarding the definition of best interests, it is customary to assume that a person’s best interests are usually best served by measures that offer hope of prolonging life or preventing damage to health.


Factors to be considered when assessing “ best interests”

* The patient’s own ascertainable wishes , feelings and values

* The patient’s ability to understand what is proposed and weigh up the alternatives

* The patient’s physical and emotional needs


* The implications for the family treatment or non treatment


Others are listed also ( page 4)

We therefore observe a failure in the assessment of “ best interests” of the child. Others includes the likelihood and degree of clinical success, the treatment’s invasiveness and side effects and the wishes and needs of the family. Additionally some people believe that there is an intrinsic value in being alive and therefore prolonging life always benefits patients, regardless of any other factors (p116). The majority of children with even every severe physical or mental difficulties are able to , or may in the future , experience and gain pleasure from some aspects of their lives.

The health care rights of children and young people are also set out in advisory statements such as the World Medical Association’s Declaration on the Rights of the Child to Health Care.  1.3.6 ( page 14) states

“ To be looked after appropriately, without DISCRIMINATION of any kind including grounds of disability” and a right to confidentiality.


Decision making for children is unable to decide for themselves is usually , and rightly , left to parents and the health care team. It is widely agreed that parents need time , respite facilities , possibly counselling and certainly support from health professionals, but in most cases they are best placed to judge the child’s interests and decide about serious treatment ( p106). 


Every effort must be made to obtain a resolution when a dispute arises. This was not done.  Decisions made were secretive and often compounted the mistrust in the medical professionals.  Every fundamental right for the family’s privacy has been violated in terms of confidentiality and consent. It is paramount that in clinical practice this is maintained.


The Emergency protection order was obtained to place a Do Not Resuscitate decision on the child.  We can find no other reason for this method of action by the clinical team. In effect the decision made was thus secretive and only explained to the parents at the twelfth hour.


The main legal liability lies in the following avenues where the family are free to seek recourse

a) Victmisation/harrassment and bullying

b) Defamation of  the family on numerous occasions.

c) False and misleading information presented for the Emergency Protection Order which may amount to fraud. Perverting the course of justice

d) Human Rights Legislation

e) Non Consent

f) Breach of Confidentiality

g) Assault/battery due to non consent

h) Recklessness and direct causation of death from this assault – possible manslaughter needs to be investigated.

i) Disability Discrimination ( Disabilility Discrimination Act)

j) Cultural and Racial Insensitivity ( Race Relations Act)


The insensitivity of the professionals has been overwhelming. The reasonable doctor would not inform the parents of the death of their child in a court room. The  correct method would be to summon them to the hospital where there would be nursing support and break the news. Although the Trust solicitors have listed her grief reaction and implied it was abnormal. We state that in these circumstances her reaction was entirely reasonable given the draconian measures taken to keep her from her only child namely the EPO etc.  Following the death of her child , the social services documentation lists “ Munchausen’s byproxy”. We would like to stipulate that there is no mention of this throughout the documentation and there is no evidence to verify this defamatory remark. In addition social workers are NOT qualified to diagnose this condition. The insensitivity of all professionals involved in this case has been astounding.


In summary,  we have shown the failures in many areas of Redbridge NHS Trust and King Georges Hospital NHS Trust and their staff using a Emergency Protection Order to provide a “ Do not Resuscitate” Order to a five month old child without the consent of the parents. We note that there has been substantial clinical decision confusion, conflicting views and opinions and a severe breakdown in relationship. This has led to a breach in confidentiality, lack of consent resulting in an assault directly leading to death. In our opinion, no child or family should be subjected to this form of treatment in the United Kingdom which is a denial of the fundamental rights of the child and parents.



a) Potassium as the cause of death


a) Potassium were provided as oral supplements according to the drug charts

b) This is within the normal range.

c) We observe that all Forensic Investigations are inconclusive

d) The determination of potassium after death is inaccurate

e) There is therefore insufficient evidence for Potassium to have caused the death of this child


b) Milk as a cause of death

This is unlikely. We have explained this to the relatives. The stomach had not been aspirated prior to death due to the rush of the arrest. Subsequently, the milk aspirated into the respiratory system. This is a common complication of resuscitation.  This was the reason for the mother observing milk flowing from the mouth and nose.


c) Retention of Organs


It would be prudent for the pathologists and mortuary attendants to allay the family’s concerns immediately regarding the child’s organ removal and retention in the light of recent public sensitivity in this matter eg if her eyes and cornea were retained, it would be prudent to clarify the whereabouts of the child’s eyes to the family and to return them as soon as possible.  We note that there is no ophthalmology pathology / history written in either of the pathology documents provided.


RECOMMENDATIONS to facilitate investigations


a) We recommend that further clarification is required with respect to the discrepancy in dates of obtaining specimens and also the Post Mortem. The police and Coroner need to clarify to the family the dates written on the PM report . These are Date taken is stated as 26/10/00 and date received is listed as 30/10/00 which was the date of the post mortem.  It would be prudent to clarify this to the family immediately.

b) The family require and are entitled to an account of the whereabouts of the body from 1900 on the 26th October 2001 onwards. This is in the form of evidence of who accompanied the body and also access to the Mortuary book. This is for the family’s own peace of mind. There have been conflicting accounts regarding the details and whereabouts of her body. We suggest that a police officer take the time to answer the family’s questions regarding these matters.

c) There has been no assessment of the amount of adrenaline present in the child post resuscitation to show that the child was actually resuscitated. We cannot see this drug in the forensic reports. We would be grateful for any clarification of the presence of adrenaline.

d) The rapid clearance of the room after resuscitation occured. Efforts should be made to deduce what equipment was used on the 26th October 2001. Efforts should be made to investigate the details of the resuscitation. It would be prudent for the location of the orginal baby’s clothes to be available for forensics.

e) We require all records of the 26th October 2001 from the switchboard at King Georges Hospital . It is essential we established who was bleeped on that day by the junior staff. 

f) Full and complete statements are required from each doctor/ nurse involved in the resuscitation process to deduce the times and actions by them. At the time of the report this was not done by the police. King Georges Hospital have since clarified that there have been no investigation by the police or statements made. It would be useful to obtain the statement of Ms Judi Fox who was the nurse allocated for Sunaina on the morning of the 26th October 2001.

g) All statements are required for the individuals listed at the start of this report. This is imperative to obtain an overview of the situation at hand

h) A bed state for Great Ormond Street Intensive care is required. .

     This will cause a lacuna in the investigative procedure and thus a discrepancy in the case formulation which will be a breach of a right to a fair trial.


i)  Picture of the stool/ chair, supposedly used to barrade the door is required as an   exhibit. At the time of this report Redbridge Trust had refused this request to the family. 

i) It would be prudent of Redbridge Trust to correct the numerous inaccuracies in spelling of Sunaina’s name and her family.  By comparison we have never noted so many spelling errors attributed to the Asian nature of the names. Nevertheless, in accordance with the Race Relations Act and cultural sensitivity, it would be prudent to correct all inaccurate spellings, which are too numerous to mention.  The name was spelt correctly at the front of the records therefore it follows that  further numerous mistakes, should be corrected.  This includes Redbridge NHS Trust, Great Ormond Street to all investigative reports.

i) We would like details of the following – how many Trisomy 18 children has Dr Robinson, Dr Shirlasker and Dr Petros treated.  We require details of the number and Hospital ID or dates to identify their expertise with dealing with a significant number of such patients. 

We require details of APLS certification details of all staff involved in resuscitation of the patient. We require proof that all certification is up to date.

j) The Ethics Committee report from  Great Ormond Street is required

k) We require a picture of the chair used to “ barricade “ the door. This has been denied by King Georges Hospital.

l) Staff cover statistics for Clover ward Redbridge

m) All details of rotas for the doctors and nurses oncall over that period as there are some discrepancies which the family wish to view. Explanations of why Dr Rager was oncall after his shift was over . We suggest this may have been due to ward round commitments after his oncall.  This needs to be clarified.

n) All Social Services Documents are  required

f) We note that there was an admission by Dr Solebo at taking blood prior to death. He is recorded as saying this but has since refused. It would be prudent for the Police to deduce the existence of this blood result .This can be done

g) Forensic referral for the Drug charts where Potassium chloride is altered

h) Missing page of the medical records between D326-D327 . There is no signature at the bottom of D326 and D327 begins midsentence. Please clarify these pages.

i) Telephoning the lab directly

ii) Lab log books where all specimens are logged. We require a copy of this page on the date when the samples were taken

iii) All computer biochemistry/ haematology results for this day and this patient are required


i) It is imperative that the Police are able to deal with the family with sensitivity. So far the evidence from the correspondence from the Coroner and Police to the family have shown a great deal of antagonism.  It is not unreasonable for the family to perceive that their child was killed given that a “ Do not resuscitate “ order implies that no efforts will be made for life.  In our view, the family has been failed by King Georges Hospital and Great Ormond Street.  They have had two bereavements in the family and faced with a very unsympathetic authorities from the beginning.  We suggest that it is imperative for the police force to deal with these issues point by point until such time that the family have developed trust within the excellent work in investigation that is possible from the British Police. It is important that ALL there questions are answered logically, with evidence to ensure that the family are provided with a good explanation for each question.  We have attempted to allay some of their concerns which have arisen due to lack of communication between them and their own doctors.  We do not wish for this mistake to occur with the police . It is imperative that in line of the Macpherson report, their cultural background is taken into account. In addition,  the family are suffering from emotional shock of the death of their child compounded by the conflicts in the answers to all questions they have asked. We have viewed the correspondence the family have received from Dr Stearn , who is the Coroner appointed .  We consider the correspondence to be very antagonistic towards the family. In light of this, the family CANNOT receive a fair trial with this coroner preciding over the case. WE THUS REQUEST AN INDEPDENDENT CORONER BE APPOINTED TO PRESIDE OVER THIS CASE AS A MATTER OF URGENCY.  We note a breakdown in relationship between the coroner and the family and hence this is NOT in the best interests of the family. We hope therefore that a new and fresh investigation is opened for this family to answer all the questions that we have not been able to explain due to lack of statements and a further investigations which are in the police jurisdiction.

It should be noted by all police officers that  this family require good communication skills and sensitivity.  One cannot expect a family who has been through the death of their child to view the situation as we would . It is their fundamental right to obtain the answers. We suggest that the family be questioned and statements obtained in detail. A female officer would be more appropriate to the sensitive issues of the loss of a child  to question the mother in detail and we suggest that this is done to obtain the maximum amount of information and evidence that the family have in their possession. 


IT MUST BE NOTED THAT their allegations are a in the form of asking the authorities the questions they would like the answers to. Their mistrust has stemmed from the secrecy of the health professionals. It is not an unreasonable reaction and it must be stressed that the family DO NOT HAVE A PSYCHIATRIC ILLNESS as imputed previously.  Their allegations therefore remain because these questions have not been answered in any way or form. These answers are required to be logical and rational and explained in detail in order for the allegations to be held or refuted. 

We are thus taking this opportunity to stress that it is imperative that your officers deal with this case with great sensitivity and logic so we are all able to pursue justice for a dead child as opposed to compound the antagonism that has been created. 


j) We have had great difficulty in obtaining documentation, evidence from the hospitals who have in effect refused to co-operate with the family. We thus recommend that these documents are obtained under PACE.

k) We doubt that an additional post mortem would be beneficial in the investigation of this case. We would strongly advocate a burial of the body as soon as it is feasible to assist with bereavement . 

l) We request that all slides etc are reviewed by an Independent Pathologist of their choice .  It would be useful to obtain an independent opinion of the histology.

m) We would advocate that a number of paediatricians assess the video footage of the child to assess development . This is to be done without the knowledge and background of the hospital or specialists.


n) It would be useful for the police to re construct the scene of the resuscitation to verify all events of the case during that time frame.




* A New investigation which a police team is required as there are many elements of a criminal nature.

* An Independent coroner to be appointed or the inquest held at a different court . This is in line with Article 6 of the Human Rights Act 1998

* All documents are required to be seized under PACE immediately from the Social Services, Great Ormond Street and King Georges Hospital

* Further questioning and inquiries are required before the inquest is carried out.  We would refer this case to a full inquiry due to the number of individuals involved and the complexities.

* It is imperative that the relationship between the police and the family is reinstated The interests of a dead child is served well by the justice system of the United Kingdom.



a) Presentation of this document to Scotland Yard and the Home Office in London

b) Commencement of NHS Complaints Procedure to the NHS Health Ombudsman

c) Commencement of Social Services Complaints Procedure

d) Civil Litigation to be pursued to the European Courts

e) Criminal Litigation

We will be available for any enquiries regarding this report and will be more than happy to assist the police or legal advisors in the future. 

This report has been formulated in memory of Sunaina Chaudhari . May she rest in peace.




Trisomy 18 (Edwards Syndrome)




Medical Management Considerations


Resources for Families

Advisory Committee

Publication Information


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Description and Cause

Trisomy 18, the second most common trisomy after Down Syndrome, is a syndrome with severe physical and intellectual implications. Life expectancy is very limited: about 30-50% of affected individuals die within one month of age, and less than 10% survive beyond one year of age. Females are somewhat more likely to survive than males. The genetic cause of this syndrome is nondisjunction resulting in trisomy of chromosome 18 in 90% of cases, mosaicism in 5-10% of cases, and translocation in 1-2% of cases.


* 1:3,000-5,000 live births

* Females > Males 4:1

* Recurrence risk to patient's siblings: 1%

* The occurrence of trisomy 18 increases with increased maternal age.


Prenatal: amniocentesis or chorionic villus sampling and chromosome analysis

Postnatal: fluorescent in situ hybridization (FISH) analysis or bone marrow karyotype

Characteristic Features

* Small for gestational age

* Restricted growth

* Microcephaly

* Clenched hands with overlapping fingers

* Low-set ears

* Complex congenital heart malformation and defects (95%+) (ventricular septal defect, atrial septal defect, patent ductus arteriosus, pulmonary valve stenosis, etc.)

* Esophageal atresia

* Diaphragmatic hernia

* Neural tube defects

* Small mandible with large recessed tongue

* Cleft lip/palate

* Micrognathia

* Short palpebral fissures

* Hypoplastic nails

* Rocker-bottom feet

* Respiratory distress

* Gastric distension

* Feeding difficulties (poor suck/swallow)

* Failure to thrive

* Developmental delays

* Mental retardation (usually severe/profound)

Possible Associations

* Cerebral Palsy

* Spina Bifida (5%)

* Hydrocephalus

* Hearing deficiency

* Ear infections

* Amenorrhea

* Aspiration or airway obstruction

* Gastroesophageal reflux disease

* Seizures (30% in first year)

* Apnea

* Respiratory difficulties (pneumonia, pulmonary hypertension)

* Scoliosis

* Eye abnormalities (10%) (infections, coloboma, esotropia, microphthalmos, corneal opacities)

* Radial aplasia (5-10%)

* Liver abnormalities (hepatoblastoma)

* Kidney defects (Wilms tumor, hydronephrosis)

* Omphalocele

* Urinary tract infection

* Constipation

* High blood pressure

* Sinus infections

* Hypersensitivity to sunlight



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Note: These considerations are in addition to the normal medical care provided to an individual without trisomy 18. All recommendations can be addressed through clinical examination by the primary care provider, unless otherwise noted.

Because life expectancy is so limited and individuals who survive beyond infancy usually present severe physical and intellectual disabilities, it is important to discuss ethical considerations with the infant's parents, or to refer them to a hospital ethics committee if possible. In many cases, major surgery may only inflict unnecessary suffering since life expectancy usually remains very limited. Many parents may conclude that non-intervention is in their child's best interest. It is equally important to remind parents that 5-10% of children with trisomy 18 do survive the first year of life, and those who do survive usually advance to some degree in their milestones and interact with their families in many ways. Thus, the outlook is not necessarily hopeless. For long-term survivors, many of the early problems become more manageable as physicians, specialists, and parent’s work together to find appropriate solutions. In any case, it is important to focus on the unique medical circumstances of the child and the personal feelings of his or her parents.

Infancy (Birth to 1 year)

* Perform complete physical and neurological exam to detect congenital anomalies

* Perform chromosome analysis

* Expect to provide full support, including artificial ventilation and endotracheal intubation

* Evaluate cardiac function (echocardigram); refer to paediatric cardiologist as needed

* Discuss option of corrective heart surgery if infant has reasonable chance of living for some time

* Obtain abdominal ultrasound including kidney and liver by 10 months of age, repeating as indicated

* Consider nasogastric tube or gastronomy and closure of tracheoesophageal fistula as needed (or refer to gastroenterologist)

* Assess hearing by 6 months of age (otoacoustic emission (OAE) or brainstem auditory evoked response (BAER))

* Assess vision by a few weeks of age (clinical examination by primary care provider, or refer to opthalmologist)

* Provide genetic counselling, including discussion of recurrence risk

* Refer to early intervention programs and trisomy 18/disability support groups

* Discuss possibility of SSI enrolment

Ongoing (all ages)

* Refer to cardiologist as needed

* Monitor hearing and vision regularly

* Monitor for scoliosis

* Monitor growth

* Refer for physical and occupational therapy evaluation as needed

* Ensure psychological support for parents

* To prevent reflux and aspiration, recommend small, frequent feedings and elevate head during and after feedings

* To prevent constipation, recommend adequate fluid and fiber intake and consider stool softener medication, laxatives and/or suppositories

* Refer to nutritionist as needed

Childhood (1 to 13 years)

* Monitor speech and language progress

* Refer for speech and language therapy evaluation as needed

* Monitor school progress (if applicable)

* Recommend and arrange for dental care (note: children with congenital heart disease should receive antimicrobial prophylaxis before dental procedures)

Adolescence and Adulthood (13 years and over)

* Discuss long-term financial plans

* Discuss alternative community living resources

* Monitor prevocational training and vocational activities

* Discuss community-supported employment opportunities



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Peer-reviewed Journal Articles/Academies

American Academy of Pediatrics, Committee on Bioethics. 1996. "Ethics and the Care of Critically Ill Infants and Children." Pediatrics 98 (1): 149-152.

Bos, AP, et al. 1992. "Avoidance of Emergency Surgery in Newborn Infants with Trisomy 18." Lancet 339 (8798): 913-915.

Carey, JC. 1992. "Health Supervision and Anticipatory Guidance for Children with Genetic Disorders (Including Specific Recommendations for Trisomy 21, Trisomy 18, and Neurofibromatosis I." Pediatric Clinics of North America 39: 25-53.

Goldstein, H and ICG Nielsen. 1988. "Rates and Survival in Individuals with Trisomy 13 and 18." Clinical Genetics 34: 366-372.

Van Dyke, DC and M Allen. 1990. "Clinical Management Considerations in Long-term Survivors with Trisomy 18." Pediatrics 85: 753-759.

Special Interest Groups/Other Publications

Barnes, Ann M. RN and John C. Carey MD. "Common Problems of Babies with Trisomy 18 or 13." Support Organization for Trisomy 18, 13, and Related Disorders. Accessed April 21, 1999 at

"Clinical Management of Edwards' Syndrome" (editorial). 1992. Lancet 339 (8798): 904.

Showalter, D. Scott MD and John C. Carey MD. "Health Supervision and Anticipatory Guidance for Infants and Children with Trisomy 18 and 13: Suggested Guidelines." In:A Guide for Professionals. Accessed April 21, 1999 at

Smith, DW. 1988. "Trisomy 18 Syndrome." In: Smith's Recognisable Patterns of Human Malformation (4th ed.). Philadelphia: WB Saunders Co., p. 16-19.



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California Department of Developmental Services, 916-654-1690,

California Regional Centers, 915-654-1958,

The Chromosome 18 Registry and Research Society, 210-657-4968

Exceptional Parent Magazine, 800-247-8080,

March of Dimes Birth Defects Foundation, 914-428-7100,

Support Organization for Trisomy 18, 13, and Related Disorders (SOFT), 800-716-SOFT,


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Theodore A. Kastner, M.D., M.S.

Felice Weber Parisi, M.D., M.P.H.

Romie H. Holland, M.D.

Patrick J. Maher, M.D.


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Funded by a grant to Golden Gate Regional Center from the California Department of Developmental Services

For more information, contact:

Golden Gate Regional Center

120 Howard Street, Third Floor

San Francisco, CA 91405

(415) 546-9222

California Center for Health Improvement

1321 Garden Highway, Suite 210

Sacramento, CA 95833

(916) 646-2149

This document does not provide advice regarding medical diagnosis or treatment for any individual case, and any opinions or statements contained in this document are not intended to serve as a standard of medical care. Physicians are encouraged to view the considerations presented in this document in light of evolving scientific information. This document is not intended for use by the layperson. Reproduction of this document may be done with proper credit given to Golden Gate Regional Center and the California Center for Health Improvement.

This document is available at

Last updated May 17, 2000




Copyright 2001 CCHI/GGRC/CA DDS. All rights reserved. Feedback

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Kirsten Guptill, above, is cuddled by her sisters, Julie. left, and Lisa, right. Below, Kirsten, who has a rare chromosomal defect called trisomy 18, plays with her mom, Diana Guptill. Photos by Dennis Oda, Star-Bulletin


Kirsten's battle with trisomy 18

helps the Guptills see every

day as a miracle

By Jim Witty


Kirsten Guptill was only supposed to live five months, a year at the outside.

Born with trisomy 18, a chromosomal brain defect that nearly always proves fatal, Kirsten had to contend with congestive heart failure, sleep apnea and pneumonia in the months after birth. She had a paralysing stroke at seven months.

For the other Guptills - Diana and Neil and children Michelle, Julie, Lisa, Douglas and David - Kirsten has meant tube feedings, oxygen masks and all-night bedside vigils.


Together, the Guptills have battled back from every reversal.

She's also meant great joy in small victories, a shared family bond and daily lessons in unconditional love.

Kirsten, all 3 feet, 221/2 pounds of her, turns 6 on April 2.

"She paid her dues," said mother Diana. "She spent the first 17 months just surviving."

And the next 55 bucking the odds.

According to researchers, one in every 8,000 babies are born with trisomy 18, which is an extra chromosome in their 18th chromosome. Just 30 percent make it through their first month and half of those survive seven months, said Oahu physician Raydeen Busse.

Diana Guptill calls Kirsten her "change of life baby." At 39, her pregnancy came as a surprise. When the fetus was diagnosed with the defect, she and her husband, both active Mormons, opted to see the pregnancy through.

The ensuing six years have affirmed their decision just the same, said Diana.

"Each day is a gift," she said. "I'm very grateful that she's alive. I know that one day she'll have to go back to her heavenly father. . . . She's touched many lives. For us it's been a joyful experience."

Four pounds, 2 ounces at birth and seven weeks premature, Kirsten wasn't born blind or deaf like many trisomy 18 babies. But her heart was weak, her bones wafer thin and her grip on life tenuous.

Although Kirsten's prognosis is still clouded, her doctors have given up predicting her life span.

The Guptills say they're prepared for any eventuality.

"For some people, death can be a tragedy," she said. "I view it as the next step."

For now, the Guptills revel in Kirsten's relative good health and the milestones along the way. Like the day she learned to crawl and crumpled up Brother Douglas' homework. And her birthdays.

Diana Guptill credits Kirsten's survival against the odds to her grit and an early regime of physical therapy. Her once mushy muscles have tone thanks to regular exercising.

She credits her family's upbeat attitude to faith in God and a nation-wide support group - Support Organization for Trisomy 18, 13 and Other Related Disorders. Given the rarity of surviving trisomy babies and the paucity of information on the defect, the group disseminates valuable information to parents, Diana Guptill said.

"I believe that handicapped children should reach their fullest potential within their given limitations," said Diana Guptill.

"If people would just accept these children. Be grateful for who they are. Don't try to change them into the perfect child."

From eight-year-old David's perspective, Kirsten is the perfect child. "She's cute," said brother David. "I love her."




Judith Wolpert

Our daughter Kameron has full Trisomy 18. She was born May 8, 1997 in Charleston, South Carolina. We knew of Kammie's diagnosis at about twenty-four weeks into the pregnancy. Kammie has no heart defects, but she is globally delayed. She is terribly spoiled by her big brother (Derek - 14) and big sister (Kelsey - 12). We are working on prop sitting and started three-year-old public school in the fall.

Kammie has under-developed thumbs and is currently on a diet! She is fed through a Mickey button and receives Pedisure with Fiber, essential fatty acids, and a laxative tea. Her weekly therapies include speech, occupational, aquatic and physical











British Medical Journal

May 6, 2000

Brain stem death: managing care when accepted medical guidelines and religious beliefs are in conflict.(Education and Debate)

Author/s: David Inwald

Summary points

Brain stem death is not recognised by orthodox Jews as death of the individual

Families should not be pressurised into consenting to withdrawal of care

Rabbinical authorities should be consulted for moral guidance if an orthodox Jew is declared brain stem dead while being ventilated mechanically

Compromises that are acceptable to medical and nursing staff are usually possible

Asystole usually occurs within a few days of brain stem death even if limited supportive care is continued

What should doctors do when a patient in intensive care is declared brain stem dead, but according to their family's religious beliefs is still alive and must continue to be given treatment? Two UK paediatric intensive care specialists describe how they resolved such a difficulty by allowing their patient, an orthodox Jew, to remain on mechanical ventilation until she died from "natural" causes, while a former chief rabbi explains the Jewish position in more detail. However, two Australian intensive care specialists believe that unreasonable delay in stopping treatment serves neither the interests of the patient nor those of society and can be difficult for staff.

Consideration and compromise are possible

David Inwald, Immanuel Jakobovits, Andy Petros

A young orthodox Jewish girl in our paediatric intensive care unit was declared brain stem dead. However, neither her parents nor their religious advisers accepted that she was dead and refused to countenance withdrawal of care. We describe the ethical dilemmas surrounding her management and suggest strategies for dealing with similar cases in future.

Case report

A 3 year old Jewish girl was being investigated by a paediatric neurologist at another hospital because of unsteadiness, intermittent tremors, and facial weakness. Magnetic resonance imaging, performed under general anaesthesia, showed a large, right sided, temporal mass extending into the midbrain. The scan was performed as a day case and the child returned home to await urgent neurosurgical referral. The procedure had been undertaken without event, but some hours later the girl suddenly became unresponsive and was taken to her local hospital by emergency ambulance. She was found to have a reduced level of consciousness, posturing consistent with a decorticate state, and unequal pupils. The girl was treated with dexamethasone and mannitol and was referred to our institution for further management. She was assessed by our transport team and was intubated before being transferred to the paediatric intensive care unit.

On arrival at this hospital, the patient was taken to theatre for emergency debulking of the tumour. At craniotomy her intracranial pressure was grossly raised and although some tumour tissue was resected, the procedure had to be abandoned after 7 litres of blood had been lost. The tumour cavity was packed with surgical swabs and the skin was closed. When she returned to the intensive care unit, the child was bradycardic, hypertensive, and had a fixed and dilated right pupil. The parents were told that the prognosis was hopeless and that their daughter had been brought back to the intensive care unit to die. Some hours later, both pupils became fixed and dilated. Formal brain stem testing was performed the next day and the child was certified to be brain stem dead.

The intensive care team advocated withdrawal of care, in line with the recent Royal College of Paediatrics and Child Health guidelines.[1] However, this was in conflict with the family's wishes. They had consulted their rabbi, who insisted that Jewish law would not allow treatment to be withdrawn. Under Jewish law the child was still alive, and to withdraw or withhold care would be tantamount to murder.

Medical and religious interpretations

Brain stem death has been accepted as death of the individual in the United Kingdom since 1976, when the royal colleges published criteria for making a diagnosis of what was then called brain death.[2] The Royal College of Paediatrics and Child Health and the Department of Health have accepted the criteria as being applicable to term infants and children over 2 months of age. Such is the degree of consensus on the issue that supporting legislation has not been required.

As Jewish law is hundreds if not thousands of years old, it does not deal with the issue of a brain stem dead patient on a ventilator. However, the definition of the moment of death is addressed. In one source, physical decapitation of an animal is said to determine death even if there is some degree of subsequent movement, provided that it is "pirchus be'alma" or like the "severed tail of a lizard that twitches spasmodically."[3] Another source states that in the case of an individual trapped under a fallen building, absence of breathing may determine death even if cessation of the heartbeat is not established.[4] Progressive Jews, who accept brain stem death as a valid determinant of death within the Jewish tradition, argue that it is physiologically equivalent to decapitation--that destruction of the brain stem means inability to breathe spontaneously and that movement of the heart as it beats falls into the category of "pirchus."[5]

The arguments against the latter view are that brain stem death is not the equivalent of anatomical decapitation and that the coordinated beating of the heart and maintenance of circulation cannot be characterised as "pirchus" since it is no different to the beating of the heart in a normal individual. In support of this view, there are also sources which state that death has occurred only when there is neither breathing nor cardiac pulsation.[6 7] Since this is not the case in a brain stem dead patient on a ventilator, these patients are not considered dead. This is the majority view in the orthodox tradition,[8 9] and it is summed up below by the former chief rabbi of the United Kingdom and expert on Jewish medical ethics, Lord Jakobovits.

So long as the heart still functions and the blood circulates, death has not yet set in. But this does not mean that a lingering life, especially when experiencing great pain, must be prolonged at all costs and in all circumstances. While one may not actively cause or hasten the onset of death, and one may therefore never withhold normal and natural means to sustain life--such as food, drink, blood, or oxygen (or air)--one need not artificially prolong life ... by administering antibiotics.., to suppress infection. Thus, one may allow nature to take its course by withholding such treatment. On the responsibility for making such decisions ... affecting life and death, it should be emphasised that these should, wherever possible, be left to disinterested parties, preferably including experts, including moral specialists such as experienced rabbinic authorities.

The practice of maintaining brain stem dead patients on mechanical ventilation until they become asystolic has largely ceased in the United Kingdom as a result of the clear guidelines of the royal colleges. However, published data show that even if supportive care is continued, asystole occurs within days of brain stem death.[10]

Our care plan

After discussion with the rabbinical authorities, a plan of care was agreed in line with Lord Jakobovits's recommendations. No action was taken to hasten cessation of the heart beat. Ventilation and intravenous fluids were continued. There was, however, limitation of care to allow the heart to stop beating as soon as possible within the limits proposed by Jewish law. Invasive and non-invasive monitoring were stopped and antibiotic treatment was withdrawn. There was to be no resuscitation in the event of an arrhythmia, no endotracheal suction, and no renal support. Asystole occurred four days after the child had been declared brain stem dead.


The aim of intensive care should be to treat the family, not just the patient. Thus, we suggest that when an orthodox Jew is declared brain stem dead while on mechanical ventilation, a death certificate should not be issued. In these unusual circumstances it is more important to respect the cultural traditions of the family than to free a bed in the intensive care unit. Asystole will occur within a few days. It should be possible to reach a compromise with the religious authorities about the level of active care that is required under Jewish law while permitting sufficient limitation of care to allow asystole to occur as rapidly as possible. However alien the belief system of Jewish law is to staff on the intensive care unit and however difficult it is for them to continue supportive treatment, the families concerned should not be asked to become "accessories to murder."

Competing interests: None declared.

[1] Royal College of Paediatrics and Child Health. Withholding or withdrawing life saving treatment in children-a framework for practice. London: Royal College of Paediatrics and Child Health, 1997.

[2] Working Group of Conference of the Medical Royal Colleges and their Faculties in the United Kingdom. Diagnosis of brain death. Lancet 1976;ii:1069-70.

[3] Mishna, Oholot 1:6.

[4] Talmud, Yoma. 85a.

[5] Tendler M. Confusion: brain stem death, pikuach nefesh and halachic integrity. Jewish Observer 1991;24:11-4.

[6] Teshuvot Chacham Tzvi, no 77.

[7] Teshuvot Chatam Sofer, Yoreh De'ah, no 338.

[8] HaLevi Wosner S. Heart transplants. In: Roodyn P, ed. Pathways in medicine. Jerusalem: Targum Press, 1995.

[9] Bleich JD. Time of death in Jewish law. New York: Z Berman, 1991.

[10] Pallis C. ABC of brain stem death. Prognostic significance of a dead brain stem. BMJ 1983;286:123-4.

Portex Department of Anaesthesia, Intensive Care and Respiratory Medicine, Institute of Child Health, London WC1N 1EH

David Inwald Wellcome fellow

44a Albert Road, London NW4 2W Immanuel Jakobovits former chief rabbi

Paediatric Intensive Care Unit, Great Ormond Street Hospital, London WC1N 3JH

Andy Petros consultant

Correspondence to: D Inwald

The Right Honourable the Lord Jakobovits died on 31 October 1999

BMJ 2000;320:1266-8

Commentary: Delay in stopping treatment can become unreasonable and unfair

Death is a common occurrence in most intensive care units. It is thus incumbent on intensive care practitioners to become as skilled in the management of death as they are in managing other complications of critical illness. The management of death requires consideration of the interests of all the people affected--not only the patient and his or her family but also of the medical and paramedical staff caring for the patient and of the community at large. The interests of these diverse groups and individuals may be in conflict, and reconciliation may be difficult or impossible. In the case reported by Inwald and Petros, some, but not all, treatment continued to be given to a patient who was beyond the legal certification of death based on brain stem function. Continuation of treatment was based on compassionate concern for the religious beliefs of the family rather than on the interests of the patient.

Delay in stopping apparently futile treatment is often required where the arrival of a close relative is awaited or the family needs time to adjust to or accept an inevitable, though often sudden, death. In an affluent society, this seems a reasonable compromise between the various interests involved. At some point, however, this delay becomes unreasonable.

Even if one does not accept the concept of brain death it is very difficult to argue that the patient has any interest in continued treatment after brain function has stopped irreversibly. Continued treatment may offend the dignity of the individual, by using him or her as a means to achieve the ends of others. How soon after brain function ceases this becomes an issue is difficult to determine. In these circumstances, four days is a long time. Furthermore, with continued ventilation there is no immediate inevitability about cardiac standstill, and patents have survived (with other interventions not withheld) for up to 64 days.[1 2]

Staff caring for the patient may have difficulty reconciling the apparent misuse of scarce resources or the compromise of the patient's dignity. This will increasingly be an issue the longer treatment continues and is compounded by the apparent inconsistency of continuing some treatments but not others. Though it is usually feasible for practice in the intensive care unit to reflect compassion within a legal and ethical framework, this becomes increasingly difficult when nonstandard management regimens preclude access to an intensive care bed for patients with a chance of survival.

Judaism is a mainstream philosophical system. Other, more fringe religions also make demands on the medical system that run counter to usual practice. For example, we have been asked by a small religious group to maintain a (brain) dead patient in order that prayer meetings may be held to effect a resurrection, and a zealous relative requested that we withhold analgesics from a dying patient in severe pain to enable a more favourable afterlife. Man's interpretation of God's law is inconsistent both within and among religious groups. If the requirements of one group are accommodated, does not consistency demand that this courtesy should be extended to all groups, no matter how unreasonable their requests seem?

Non-acceptance of brain stem death precludes beating heart cadaveric organ donation. Where this non-acceptance is systematic to an ethnic group, organ transplantation will become more difficult because histocompatibility genes cluster in these groups. More poignantly, should transplantation be facilitated in groups who, because of their beliefs, cannot participate in organ donation? Furthermore, is it reasonable to offer more expensive treatment options such as dialysis when a cheaper option (renal transplantation) is rejected on non-medical grounds?

The continuation of treatment in the case reported reflects compassionate concern for the religious beliefs of the family. Where these beliefs are at odds with those of society, reflected in legislation, some limitation of this accommodation is certainly justifiable and may become essential.

Competing interests: None declared.

[1] Parish JE, Kim RC, Collings GH, Hillfinger ME Brain death with prolonged somatic survival. N Engl J Med 1982;306:14-6.

[2] Antonini C, Alleva S, Campaifia MT, Pelosi G, Valle, E, Verrua M, et al. Morte cerebale e sopravivenza fetale prolungata. Minerva Anestesiologica 1992;58:1247-52.

Intensive Therapy Unit, Royal North Shore Hospital, St Leonards NSW 2065, Australia

Malcolm Fisher head

Raymond F Raper senior staff specialist

Correspondence to: M Fisher mfisher@med.


COPYRIGHT 2000 British Medical Association

in association with The Gale Group and LookSmart. COPYRIGHT 2000 Gale Group









From: <>

To: <>

Cc: <>

Sent: 27 May 2001 02:39

Subject: Re: T18


> Dr. Carey's address is under the copy above for you to contact. I hope that

> helps. Children above 6 months that belong to SOFt , using 1999 report (I

> just sent the 2000 year home to membership to get this year's) was 360 kids.

> The oldest right now is I believe 32, my daughter is 20. Again this is

> only the people who are registered with SOFT so I am sure there are more!


> Barb











1: Am J Med Genet 1994 Jan 15;49(2):170-4

Related Articles, Books

Survival in trisomy 18.


Root S, Carey JC.


Department of Pediatrics, University of Utah Health Sciences Center, Salt Lake City 84112.


Prenatal diagnosis of trisomy 18 by amniocentesis in the latter half of pregnancy is now a common event. Accurate prognostic information is crucial for families making decisions about delivery management. Three recently published studies showed much shorter survival for trisomy 18 than was reported by earlier papers. For this reason, we studied trisomy 18 survival. We examined chromosome laboratory records to find all trisomy 18 diagnoses made in Utah between 1979 and 1988. Death certificates and hospital records were used to determine survival. We found 64 liveborn cases with trisomy 18 out of 388,563 total births over the 10-year period, a prevalence of 1/6071. Our results show a median survival of 4 days and a 1 week survival of 45%, similar to that reported in the 3 recent studies. However, we had a significantly greater survival at 6 months (9% in Utah versus 3% in Denmark) and 1 year (5% versus 0 in the 3 studies). In contrast to recent studies, earlier investigations showed 80% survival at 2 weeks and 8% at 1 year. It is not surprising that recent studies show shorter survival, since in the 1960s the diagnosis was typically not made until age 2 months. With prenatal and neonatal diagnosis many cases which would have died prior to detection in earlier times are now diagnosed. The longer survival discrepancies are more difficult to explain, but may simply be due to small numbers.


PMID: 8116664 [PubMed - indexed for MEDLINE]




1: Am J Med Genet 1994 Jan 15;49(2):189-94

Related Articles, Books, LinkOut

Natural history of trisomy 18 and trisomy 13: II. Psychomotor development.


Baty BJ, Jorde LB, Blackburn BL, Carey JC.


Department of Pediatrics, University of Utah School of Medicine, Salt Lake City.


Developmental data were abstracted from medical records on 50 trisomy 18 individuals ranging in age from 1 to 232 months and 12 trisomy 13 individuals ranging in age from 1 to 130 months. Data on the age when trisomy 18 and trisomy 13 children achieved developmental skills were collected from a larger group of 62 trisomy 18 individuals and 14 trisomy 13 individuals whose families filled out parent questionnaires. Developmental quotient (DQ), defined as developmental age divided by chronological age, averaged 0.18 for trisomy 18 and 0.25 for trisomy 13. There was a dramatic drop in DQ from infancy to later childhood. The highest DQs and the greatest variation in DQs were in the first 2-3 years of life. Developmental ages in 7 skill areas were significantly different, with daily living and receptive language having the highest values and motor and communication skills having the lowest. When chronological age was taken into account, there was no significant difference in DQs in the same 7 skill areas, although there was a trend that was similar to the pattern of differences with developmental age. Older children could use a walker, understand words and phrases, use a few words and/or signs, crawl, follow simple commands, recognize and interact with others, and play independently. Walking and some toileting skills were also reported for trisomy 13. Although individuals with trisomy 18 and trisomy 13 were clearly functioning in the severe to profound developmentally handicapped range, they did achieve some psychomotor maturation and always continued to learn.


PMID: 7509567 [PubMed - indexed for MEDLINE








Semin Perinatol 2000 Dec;24(6):418-28

Related Articles, Books

Congenital diaphragmatic hernia: where are we and where do we go from here? CDH survival is close to 90% at most advanced centers.


Muratore CS, Wilson JM.


Department of Surgery, Childrens Hospital and Harvard Medical School, Boston, MA 02115, USA.


The infant born with congenital diphragmatic hernia (CDH) remains one of the most complex patients to manage. Pulmonary hypoplasia and immaturity of the CDH lung are well recognized as the definitive limitation leading to the high mortality rates. Based on the knowledge that CDH is more a physiological disease than a surgical disease, we have shifted our management strategy from immediate repair to delayed repair and stabilization. The associated pulmonary hypertension and right-to-left shunt are common and rarely the cause of death and as such may be largely ignored. Extracorporeal membrane oxygen has been shown to salvage some of the most severely affected neonates. Other advanced and experimental respiratory therapies merit investigation in properly conducted prospective randomized multi-center trials. Survivors of CDH have predictable pulmonary, gastrointestinal and nutritional problems which, when identified and treated early, are correctable. CDH survival is close to 90% at most advanced centers. Uniform standards for CDH management do not exist however. Therefore a minimal set of practice standards should be developed from evidenced-based scientific review.


Publication Types:

* Historical article

* Review

* Review, tutorial


PMID: 11153903 [PubMed - indexed for MEDLINE]









A) The Emergency Protection Order (Transfer of Responsibilities) Regulations 1991



Requirements to be complied with by local authorities – Section 3 states the following


(1) In forming their opinion under regulation 2(c) of these Regulations the local authority shall consult the applicant for the emergency protection order and have regard to the following considerations-

(a) the ascertainable wishes and feelings of the child having regard to his age and understanding;

(b) the child's physical, emotional and educational needs for the duration of the emergency protection order;

(c) the likely effect on him of any change in his circumstances which may be caused by a transfer of responsibilities under the order;

(d) his age, sex, family background;

(e) the circumstances which gave rise to the application for the emergency protection order;

(f) any directions of a court and other orders made in respect of the child;

(g) the relationship (if any) of the applicant for the emergency protection order to the child, and

(h) any plans which the applicant may have in respect of the child.



The leading document which is the directive in this case is from

Department of Health Home Office

Department for Education and Employment

Working Together to Safeguard Children Published in 1999 and thus in force in 2000

Copy of this documents is available from the respondents and all sections are those referred to in the original document



b) Supporting Children and Families


1.1 All children deserve the opportunity to achieve their full potential. They should be

enabled to:

* experience emotional well-being;

* feel loved and valued, and be supported by a network of reliable and affectionate



1.2 Patterns of family life vary and there is no one, perfect way to bring up children. Good

parenting involves caring for children’s basic needs, showing them warmth and love and providing the stimulation needed for their development, within a stable environment where they experience consistent guidance and boundaries.


2.1 Sound professional practice involves making judgements supported by evidence: evidence derived from research and experience about the nature and impact of abuse and neglect, and when and how to intervene to improve outcomes for children;



The Concept of Significant Harm


2.16 The Children Act 1989 introduced the concept of significant harm as the threshold that justifies compulsory intervention in family life in the best interests of children. The local authority is under a duty to make enquiries, or cause enquiries to be made, where it has reasonable cause to suspect that a child is suffering, or likely to suffer significant harm (s.47). A court may only make a care order (committing the child to the care of the local authority) or supervision order (putting the child under the supervision of a social worker, or a probation officer) in respect of a child if it is satisfied that:


the child is suffering, or is likely to suffer, significant harm; and

that the harm or likelihood of harm is attributable to a lack of adequate parental care

or control (s.31).


Under s.31(9) of the Children Act 1989:

’harm’ means ill-treatment or the impairment of health or development;


Under s.31(10) of the Act:

Where the question of whether harm suffered by a child is significant turns on

the child’s health and development, his health or development shall be

compared with that which could reasonably be expected of a similar child.


2.18 To understand and establish significant harm, it is necessary to consider:

the family context;

the child’s development within the context of their family and wider social and

cultural environment;

any special needs, such as a medical condition, communication difficulty or

disability that may affect the child’s development and care within the family;

the nature of harm, in terms of ill-treatment or failure to provide adequate care;

the impact on the child’s health and development; and

      the adequacy of parental care.


It is important always to take account of the child’s reactions, and his or her perceptions, according to the child’s age and understanding.




2.25 In 1995, the Department of Health published Child Protection: Messages from Research,which summarised the key findings from 20 research studies commissioned by the Department through its child protection research programme.

“Too often, enquiries were too narrowly conducted as investigations into whether abuse or neglect had occurred, without considering the wider needs and circumstances of the child and family; enquiries into suspicions of child abuse can have traumatic effects on families. Good professional practice can ease parents’ anxiety and lead to co-operation that helps to safeguard the child. As nearly all children remain at, or return home, involving the family in child protection processes is likely to be effective. Professionals could still do more to work in partnership with parents and the child;


2.26 Work with Children and Families

listen to children and take their views into account;

enable parents and other family members to be as fully involved as practicable,

ensuring the child’s safety and welfare;

negative initial experiences influence parents’ future relationships with the professionals.

Set a constructive tone for future intervention through the quality of work when concerns are first raised about a child’s welfare;


5.11 Parents’ permission should be sought before discussing a referral about them with other agencies, unless permission-seeking may itself place a child at risk of significant harm.


When responding to referrals from the wider community, it should be borne in mind

that personal information about referrers, including identifying details, should only be

disclosed to third parties (including subject families and other agencies) with the

consent of the referrer.


In all cases where the police are involved, the decision about when to inform the parents (about referrals from third parties) will have a bearing on the conduct of police investigations.


5.14 The process of initial assessment should involve: seeing and speaking to the child (according to age and understanding) and family members as appropriate; drawing together and analysing available information from a range of sources (including existing records); and obtaining relevant information from professionals and others in contact with the child and family. All relevant information (including historical information) should be taken into account.


5.16 The focus of the initial assessment should be the welfare of the child. It is important to remember that even if the reason for a referral was a concern about abuse or neglect



Section 17(1) of the Children Act 1989 states that:

It shall be the general duty of every local authority (in addition to the other

duties imposed on them by this Part) -

a) to safeguard and promote the welfare of children within their area who

are in need; and

b) so far as is consistent with that duty, to promote the upbringing of such

children by their families,by providing a range and level of services

appropriate to those children’s needs.

Section 17(10) states that a child shall be taken to be in need if:

a) he is unlikely to achieve or maintain, or to have the opportunity of

achieving or maintaining, a reasonable standard of health or

development without the provision for him of services by a local authority

under this Part;

b) his health or development is likely to be significantly impaired, or further

impaired, without the provision of such services; or

c) he is disabled.








5.17 Following an initial assessment, the social services department should decide on the next course of action, following discussion with the child and family, unless such a discussion may place a child at risk of significant harm. Where it is clear that there

should be a police investigation in parallel with a s.47 enquiry, the considerations at

para. 5.36 should apply. Whatever decisions are taken, they should be endorsed at a

managerial level agreed within the social services department and recorded in writing,

with the reasons for them. The family, the original referrer, and other professionals and services involved in the assessment, should as far as possible be told what action has een taken, consistent with respecting the confidentiality of the child and family concerned, and not jeopardising further action in respect of child protection concerns (which may include police investigations).



Initial assessment and enquiries: Ten pitfalls and how to avoid them

1. Not enough weight is given to information from family, friends and neighbours.

Ask yourself: Would I react differently if these reports had come from a different source? How can I check whether or not they have substance? Even if they are not accurate, could they be a sign that the family are in need of some help or support?

2. Not enough attention is paid to what children say, how they look and how they behave.

Ask yourself: Have I been given appropriate access to all the children in the family? If I have not been able to see any child, is there a very good reason, and have I made arrangements to see him/her as soon as possible, or made sure that another relevant professional sees him/her? How should I follow up any uneasiness about the child/ren’s health or well-being? If the child is old enough and has the communication skills, what is the child’s account of events? If the child uses a language other than English, or alternative non verbal communication, have I made every effort to enlist help in understanding him/her?

What is the evidence to support or refute the young person’s account?

3. Attention is focused on the most visible or pressing problems and other warning signs are not appreciated.

Ask yourself: What is the most striking thing about this situation? If this feature were to be removed orchanged, would I still have concerns?

4. Pressures from high status referrers or the press, with fears that a child may die, lead to overprecipitate action.

Ask yourself: Would I see this referral as a child protection matter if it came from another source?

5. Professionals think that when they have explained something as clearly as they can, the other person will have understood it.

Ask yourself: Have I double-checked with the family and the child/ren that they understand what will

happen next?

6. Assumptions and pre-judgements about families lead to observations being ignored or misinterpreted.

Ask yourself: What were my assumptions about this family? What, if any, is the hard evidence which supports them? What, if any, is the hard evidence which refutes them?

7. Parents’ behaviour, whether co-operative or unco-operative, is often misinterpreted.

Ask yourself: What were the reasons for the parents’ behaviour? Are there other possibilities besides the most obvious? Could their behaviour have been a reaction to something I did or said rather than to do with the child?

8. When the initial enquiry shows that the child is not at risk of significant harm, families are seldom referred to other services which they need to prevent longer term problems.

Ask yourself: Is this family’s situation satisfactory for meeting the child/ren’s needs? Whether or not there is a child protection concern, does the family need support or practical help?

How can I make sure they know about services they are entitled to, and can access them if they wish?

9. When faced with an aggressive or frightening family, professionals are reluctant to discuss fears for their own safety and ask for help.

Ask yourself: Did I feel safe in this household? If not, why not? If I or another professional should go back there to ensure the child/ren’s safety, what support should I ask for? If necessary, put your concerns and requests in writing to your manager.

10. Information taken at the first enquiry is not adequately recorded, facts are not checked and reasons for decisions are not noted.

Ask yourself: Am I sure the information I have noted is 100% accurate? If I didn’t check my notes with the family during the interview, what steps should I take to verify them? Do my notes show clearly the difference between the information the family gave me, my own direct observations, and my interpretation or assessment of the situation? Do my notes record what action I have taken/will take? What action all other relevant people have taken/will take?


7.2 Family members have a unique role and importance in the lives of children, who attach great value to their family relationships. Family members know more about their family than any professional could possibly know, and well-founded decisions about a child should draw upon this knowledge and understanding. Family members should normally have the right to know what is being said about them, and to contribute to important decisions about their lives and those of their children.


Research findings brought together in Child Protection: Messages from Research endorse the importance of good relationships between professionals and families in helping to bring about the best possible outcomes for children.

1. Treat all family members as you would wish to be treated, with dignity and


2. Ensure that family members know that the child’s safety and welfare must

be given first priority, but that each of them has a right to a courteous, caring

and professionally competent service.

3. Take care not to infringe privacy any more than is necessary to safeguard

the welfare of the child.

4. Be clear with yourself and with family members about your power to

intervene, and the purpose of your professional involvement at each stage.

5. Be aware of the effects on family members of the power you have as a

professional, and the impact and implications of what you say and do.

6. Respect the confidentiality of family members and your observations about

them, unless they give permission for information to be passed to others or it

is essential to do so to protect the child.

7. Listen to the concerns of children and their families, and take care to learn

about their understanding, fears and wishes before arriving at your own

explanations and plans.

8. Learn about and consider children within their family relationships and

communities, including their cultural and religious contexts, and their place

within their own families.

9. Consider the strengths and potential of family members, as well as their

weaknesses, problems and limitations.

10. Ensure children, families and other carers know their responsibilities and

rights, including any right to services, and their right to refuse services, and

any consequences of doing so.

11. Use plain, jargon-free language appropriate to the age and culture of each

person. Explain unavoidable technical and professional terms.

12. Be open and honest about your concerns and responsibilities, plans and

limitations, without being defensive.

13. Allow children and families time to take in and understand concerns and

processes. A balance needs to be found between appropriate speed and the

needs of people who may need extra time in which to communicate.

14. Take care to distinguish between personal feelings, values, prejudices and

beliefs, and professional roles and responsibilities, and ensure that you have

good supervision to check that you are doing so.

15. If a mistake or misinterpretation has been made, or you are unable to keep

to an agreement, provide an explanation. Always acknowledge any distress

experienced by adults and children and do all you can to keep it to a



7.22 The social services department has a responsibility to make sure children and adults have all the information they need to help them understand child protection processes. Information should be clear and accessible and available in the family’s first language.

7.23 If a child and/or family member has specific communication needs, because of language or disability, it may be necessary to use the services of an interpreter or specialist worker, or to make use of other aids to communication. Particular care should be taken in choosing an interpreter, having regard to their language skills, their understanding of the issues under discussion, their commitment to confidentiality, and their position in the wider community. There can be difficulties in using family members or friends as interpreters and this should be avoided. Children should not be used as interpreters.


79 Race, Ethnicity and Culture

7.24 Children from all cultures are subject to abuse and neglect. All children have a right togrow up safe from harm. In order to make sensitive and informed professional

judgements about a child’s needs, and parents’ capacity to respond to their child’s

needs, it is important that professionals are sensitive to differing family patterns and

lifestyles and to child rearing patterns that vary across different racial, ethnic and

cultural groups. Professionals should also be aware of the broader social factors that

serve to discriminate against black and minority ethnic people. Working in a multiracial and multi-cultural society requires professionals and organisations to be

committed to equality in meeting the needs of all children and families, and to

understand the effects of racial harassment, racial discrimination and institutional

racism, as well as cultural misunderstanding or misinterpretation.

7.25 The assessment process should maintain a focus on the needs of the individual child. It should always include consideration of the way religious beliefs and cultural traditions in different racial, ethnic and cultural groups influence their values, attitudes and behaviour, and the way in which family and community life is structured and organised. Cultural factors neither explain nor condone acts of omission or commission which place a child at risk of significant harm. Professionals should be

aware of and work with the strengths and support systems available within families,

ethnic groups and communities, which can be built upon to help safeguard children

and promote their welfare.

7.26 Professionals should guard against myths and stereotypes – both positive and negative – of black and minority ethnic families. Anxiety about being accused of racist practice should not prevent the necessary action being taken to safeguard a child. Careful assessment – based on evidence – of a child’s needs, and a family’s strengths and weaknesses, understood in the context of the wider social environment, will help to avoid any distorting effect of these influences on professional judgements.










Page 18


9) Where a child lacks capacity to consent, consent can be given on their behalf by any one person with parental responsibility or by the court. 

Page 21


Adults and Children Lacking Capacity


4) If a child lacks capacity it is good practice to involve the child as far as possible and appropriate in the decision. The decision to withdraw or withhold life prolonging treatment much be founded on the welfare  of the child. If there us disagreement between those with parental responsibility for the child and the clinical team concerning the appropriate course of action, a ruling should be sought from the court.






Children and young people

It is recognised widely that medical decisions relating to children and young people ideally should be taken within a supportive partnership involving patients, their families and the health care team. The views of children and young people must be taken into consideration in decisions about attempting CPR.


Competent young people are entitled to give consent to medical treatment, and where they lack competence it is generally their parents who make decisions on their behalf. In England, Wales and Northern Ireland, refusal of treatment by competent young people is not necessarily binding upon doctors since the courts have ruled that consent from people with parental responsibility, or the court, still allows doctors to provide treatment. The Human Rights Act may have implications for such situations, but at the time of writing these guidelines no relevant legal cases had arisen to clarify the legal position. [4] Where a competent young person refuses treatment, the harm caused by violating the young person's choice must be balanced against the harm caused by failing to treat. In Scotland, it is likely that neither parents nor the courts are entitled to override a competent young patient's decision. [5]


Usually agreement will be reached about whether CPR should be attempted if the patient suffers respiratory or cardiac failure. If disagreement persists despite attempts to reach agreement, legal advice should be sought. Parents cannot require doctors to provide treatment contrary to their professional judgement, but doctors will try to accommodate parents' wishes as far as is compatible with protecting the child's interests.


Involving people close to the patient

Despite feeling that they are the natural decision makers, people close to patients frequently report feeling excluded from a range of decision making. Even where their views have no legal status in terms of actual decision making, it is good practice to involve people close to patients in decisions. If the patient is competent, his or her agreement should be sought. It may also be helpful to ask competent patients who they want, or do not want, to be generally involved in decision making if they become incapacitated. Refusal by a competent patient to allow information to be disclosed to family or friends should be respected. Where an incompetent patient's views on involving family and friends are not known, doctors may disclose confidential information to people close to the patient where this is necessary to discuss the patient's care and not contrary to the patient's interests. It is important to be clear that the information sought from people close to patients is to help ascertain what the patient would have wanted in these circumstances, as opposed to what those consulted would like for the patient or what they would want for themselves if they were in the same situation.


Health professionals should be aware that the requirement to respect family life and impart information are important human rights considerations. Where patients have become incapacitated, relatives can provide important information to help ascertain the patient's prior views about treatment. As noted above, these need to be factored into any decision but may not ultimately be determinative. The European Court of Human Rights has taken the view that parents have the right under Article 8 of the European Convention to be involved in important decisions concerning their children. [6] By analogy, it is arguable that excluding the family of incompetent patients also breaches this right.


Baby Sunaina died suddenly on 26 October 2000, aged 5 months, in a UK hospital, after UK paediatricians decided it was in "her best interests to die" against the parents wishes and without a High Court Order.  Pathologists found three needle marks on each hand, white food material in the airways and a wound in the arm, yet an Inquest concluded she died of natural causes.  The family expatriated the body to India after UK authorities hid the body for several years and threatened to destroy the body.  There is evidence that all internal organs including eyeballs were removed unlawfully to hide the cause of death.  Police appointed paediatrician took 4 years to admit doctors, pharmacists and nurses gave deliberate drug overdoses over a period of a month preceding death.  The family want the body brought back to the UK for a second Inquest after UK Police refused to make a request to India authorities to investigate.  A needle puncture in the neck has been omitted from all UK investigations.