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Monday, 11 March, 2002, 11:01 GMT
Baby dilemma: Whose decision should it be?
The parents of Maria Aziz al-Rafi, the baby girl born with a deformed face, have agreed to let medical teams carry out emergency treatment on her.

A High Court judge in Leeds was deciding on Maria's treatment because her parents, Suzanne Taylor and Aziz Rafi, did not want a tracheotomy performed and had threatened to remove her from Newcastle's Royal Victoria Infirmary (RVI).

An exploratory procedure on the three-month-old child's airway will now go ahead and an interim care order granted will last for seven weeks and six days.

The agreement means that Newcastle social services cannot remove Maria without the agreement of her parents, and her parents cannot remove her without the agreement of the local authority.

Maria was born with Goldenhar Syndrome - a condition affecting one in 500,000 births - which left her without her right eye and ear, only half a nose, and missing half her right jaw.

Who should decide the baby girl's future? At what point should medical professionals be allowed to overrule the wishes of parents?

This debate is now closed. Read a selection of your comments below.

Your reaction

Having worked as a nurse in newborn intensive care, I know that this kind of thing sometimes creates dilemmas - whose choice, doctors or family? But in this instance, I believe that the parents brought the baby to the hospital voluntarily. Am I mistaken? So if they didn't wish medical care for their baby, why seek it out?
Roxanne, USA

In the end it's the welfare of the child that counts

Stephen Morgan, UK
As usual this subject has flushed out a number of doctor bashing know-it-alls who will condemn anyone medical who dares to suggest that they might know what they are talking about. What right have these bigots to make such comments without personal knowledge of the case and the people involved? Doctors who stand up and are counted are condemned as playing God. What rubbish. I'm sure those concerned have found this affair intensely distressing while trying to advise from the best of their professional ability. Why can't people accept the spirit even if they don't agree with the opinion? In this case I'm delighted to see that sense has prevailed and that apparently it is possible from a lifetime of work and study in medicine, actually to have an opinion worth listening to. In the end it's the welfare of the child that counts for most.
Stephen Morgan, UK

It would seem that the only body that can truly make a decision are the courts. The doctors may think that they can simply override the wishes of the parents due to medical need but they cannot. Equally the parents have to understand that their wishes may be at odds with the safety and well being of the child and therefore may have to let doctors operate. No one is right or wrong in this scenario it is simply a matter for the courts to decide.
Nick R, UK

The head should overrule the heart

Matt, UK
The majority of comments here seem to forget about what the child might want. I know that if my face was disfigured, I couldn't breathe properly, and something could have been done about it at birth, I'd never be able to forgive my parents for refusing me the right to live a normal life. Of course they have their child's best interests at heart, but in this instance, the head should overrule the heart. The doctors should take all steps necessary to give this poor baby the chance it deserves, even if that means temporarily forcing the child from its parents.
Matt, UK

The doctors don't want to carry out a tracheotomy because they enjoy it. If this operation is going to make the little girl's life easier, and make it easier for the doctors to treat her condition, then that┐s what they should do. The doctors are the experts. Trust their decision.
Charlotte, England

These parents may have the best intentions, but not the best knowledge. I can't believe the number of predictable, and naive, comments claiming "the parents know what's best"! If your own child were critically ill, would you take the medical advice of the doctors or these parents?
S Smith, UK

Grief may cloud their judgement.

Karen, England
Having experience of a young child with breathing difficulties who had to have a tracheotomy, I would like to offer the following thoughts. A baby with breathing difficulties may not suffer from them constantly, and may be more inclined to have difficulties when asleep. Also, if other operations are needed in the near future, breathing difficulties need to be under control. Anaesthesia, or even sedation can increase the risks of breathing difficulties. It is also much less risky to perform a tracheotomy under controlled conditions, then to have to perform one in a critical emergency. Considering the medical support needed for a baby with a tracheotomy, health professionals are unlikely to suggest it as necessary, unless it actually is.

Another thought is that parents who are coping with the only surviving triplet, who also has Goldenhar Syndrome, are liable to be experiencing a great deal of grief. While they may want the best for their child, grief may cloud their judgement. Denial is a common way of expressing grief. By denying their child needs a tracheotomy, this may simply be a response to the grief they feel.
Karen, England

It's the parents┐ decision: the child is too young to decide herself so it's the parents' responsability but it's their responsibility to take advice from the doctors who are experts in their field as well. At the end they should decide the best for their baby. The dialogue is very important at that point.
Mireille, UK

The operation will not in any way improve her appearance, in fact it will add a further scar

Bernard, UK
Let us be clear about the reasons for this operation: it is not to improve the chances of this child surviving (she is doing fine and is in no danger - but the proposed operation, like any medical procedure, does pose a risk). It is not to improve her quality of life - the operation will not in any way improve her appearance, in fact it will add a further scar. The only reason for the operation, as stated by the doctors themselves, is to "make her easier to care for", i.e. to make their life easier, and presumably cheaper. This cannot be a decent reason to risk this child's life.
Bernard, UK

It is a sad day when the doctors are given authority over the parents to decide what they think is best for their children. This isn't the first case in the UK recently where this has happened. What's next?
TonyR, USA

It's the parents' decision whether they want their baby to have an operation or not. At the end of the day, it's their consent. The doctors should listen to the parents' choice.

I am disgusted at the 'bashing' of the parents in this case, labelling them ignorant and irrational

C. Jones, Wales
I think this case raises some serious issues. As a parent myself I am deeply concerned about the role the authorities are playing in deciding the fate of the child. This is the sole responsibility of the parent (up to the point that they prove to be incapable of it). I am disgusted at the 'bashing' of the parents in this case, labelling them ignorant and irrational. How senseless and shameful. The medical profession is a service and resource to those who cannot provide the necessary care for their family - they are not the deciders of life, future or death. Let the child return to her loving parents.
C. Jones, Wales

If the baby's condition is life-threatening, then the doctors should operate. If not, then she should go home with the parents. She is her parents' child, not the NHS's. They should make the decision.
Joe, UK

This is another outstanding example of doctors believing that they are gods. The parents must have the final word.
Alan Green, Germany

I really don't think that any doctor would want to hurt somebody else's child just because they thought it would benefit them. The doctors obviously know what's best for the child and how are the parents able to know whether this problem is making life horrible for their child.
K. Taylor, Singapore

Well obviously the doctors are experts in their field, and the parents should be forced to take their advice. Of course to be consistent, the same rule must also apply to dentists' advice, and psychiatrists should be given free reign to lock up anyone they consider really needs it. And what about mechanics? A poorly maintained car is a threat to life, so court orders should be taken against anyone that refuses to get their cars fixed. People just can't be trusted to make their own decisions. That's why we have so many experts.
Bob, Australia

A bunch of unselected self-proclaimed gods decide what is right for the people

John B, UK
As usual a bunch of unselected self-proclaimed gods decide what is right for the little people. The parents should have the final say. If they make a bad choice they are the ones who have to live with the consequences.
John B, UK

I feel that the decision should be with the parents who brought this little live onto our material world. It is their blood and their child not the child of a specialist or a doctor. I hope the court will see that the natural laws of parenting should be allowed to rule on this case and not with the decision of a medical geek.
George Taylor, United Kingdom

This poor girl does not want to grow up looking like a freak. She will be ridiculed for her deformities, and her life will not be worth living looking that ugly. Override the parents' decision.
Tom Cooper, UK

I think the child should be allowed to go home with the parents if they so wish. The hospital are behaving like fascists and totally removing the parent's right to decide what is good for their child. Until that child is 16 the parents are in control of it. Seeing as they aren't abusing it in any way I think the hospital is completely out of order.
Umph, UK

Everything should be done to improve the child's quality of life. If this involves over-riding the parent's wishes, then so be it

Mike H, UK
Everything should be done to improve the child's quality of life. If this involves over-riding the parent's wishes, then so be it. The mother and father should consider how their child would feel if he or she suffered more than might have been necessary in later life because of their decision based on 'protection', not medical improvement.
Mike H, UK

Andy W. - it is not so much the parents that must live with the consequences of this decision as the child's.
Edward, UK

It is not as if these parents do not want their child helped at all. They have spent their life savings in trying to help their daughter and are keen for reconstructive surgery. After receiving conflicting medical advice they have decided that a particular medical procedure (which is not the only option in this case) is too risky. Why on earth were the courts and social services involved? This is obviously not a case of neglect, but a case of parents trying to make an informed decision for the welfare of their child. They have every right to get a second opinion and to have their daughter transferred to another hospital if they are unhappy with the care she is currently receiving.
Georgina, UK

There are several comments on this page that it is the parents that will have to live with the outcome of this dispute. In fact it is the child who has to live with it for her whole life. Which is why, when medical opinion and the views of the parents differ so radically, someone has to act on the child's behalf, and be above the prejudices of either side. The courts have a tough job but they can call on previous cases and a mass of medical and social information to make the right decision.

The parents are a danger to their own child

The parents are a danger to their own child. They do not know best. They are trying to deny the baby essential medical treatment. They are wasting valuable time and resources.

In the today's society everything a parent or professional does to help the child is to criticize. I think the doctors were too quick to place an order on the parents and the parents were too quick to judge the surgery as unnecessary. I know what it feels like to have problems breathing - so I think that the tracheotomy is important. There has definitely been a breakdown in communication. Everybody needs to start again. The doctors need to assess the worry and needs of the parents and the parents need to listen to the doctors. All in all they need to decide BETWEEN them what is best for the little girl - after all it is her life they are talking about.
Natalie Woolley, UK

I think the doctors should treat the child. The parents are only concerned about giving the child a plastic surgery so that they won't be stuck with the shame of having a deformed child. If they were at all worried about the child's health they would let the doctors do their job and make sure that the child will live long enough to appreciate reconstructive surgery. To make it worse the parents aren't even from this country, they're just expecting our hospitals to do an expensive procedure for them, and then they'll return home with a normal-looking baby. It all seems very wrong.
Sian_Raven, UK

Does anyone remember the story of Siamese twins Mary and Jodie last year? Doctors wanted to separate them to give the stronger twin a chance of life. Jodie is now doing well by all accounts but had the original wishes of her parents been abided by, as many people felt they should have been, she would probably not now be alive.
Jane, Wales, UK

This is ridiculous! Has no one noticed that she's their daughter?

Lucy, UK
This is ridiculous! Has no one noticed that she's their daughter? Do parents have no rights any longer? I am actually shocked that this has gone as far as it has and I hope that when the issue reaches court the sensible conclusion will be reached. We trust our parents to look after us when we are young - it is not the job of the doctors to take that position from them. If the parents have been fully informed of the risks of taking their child from the hospital, yet still want to, they should be allowed to do so. The private rights of the family are being tested here.
Lucy, UK

This is a very difficult situation for all the parties involved. The parent's fear is that their child will die while having an operation. They appear to have read up about the condition and feel this operation is not needed. As a parent of 4 children I can feel for these parents. My advice to these parents is to trust what the doctors say your baby needs. We have to trust the NHS to do the best for our loved ones. I am saying this against having had a bad experience with the care of my elderly dad in my local hospital. Most caring doctors will advise for the best care of their patients. Trust the doctors to do the best for your baby, to give your baby the best in life. I know it is not easy to say to a doctor, do all you can for my baby, but you have to trust them. You have no other choice.
Margaret Salsbury, Eastbourne, East Sussex

What a sad thing. I feel this little girl should have all the help she needs and if the medical profession has to use force, that is just what they need to do. Children are dependent on their parents and society for protection. In this case I think the doctor's are right and I know the parents really want what is best for their little girl. They are just frightened right now.
Bobbi, US

I think it is very difficult one to call. I don't envy the parents their position.
Peter, UK

If the state has complete veto over your actions as a parent, who will take responsibility for the actions of children raised this way.
Bec H, UK

My personal view is that if doctors can tell what the problem is then they know what's best

R. Stewart, England
My personal view is that if doctors can tell what the problem is then they know what's best. As the news article says, this child has Goldenhar Syndrome. I have had many doctors look at me while I was undergoing treatment for cancer and have gained a valuable insight into the resources that Doctors have access to. If it is procedural which to me it sounds like it is, then it has been suggested for a reason. If the research for Goldenhar Syndrome suggests that there is a risk of the airway closing up during treatment or everyday life then the doctors and nurses should follow it at all costs. You have to understand that no Doctor would knowingly risk a child's life unless they thought that the pros out weigh the cons. If the doctors believe that the child would be better off then they should be allowed to do it. I think the Mother and Father need to sit down with the doctors and discuss some previous cases were such an op has been done. I'm sure then there will be no need to drag in the Police, Government and Media.
R. Stewart, England

If the decision on this matter rests with the parents (as many of the contributors have said), then surely so must the decision by parents who are Jehovah's Witnesses to refuse their children to receive blood transfusions, or parents who refuse to allow their cancer-suffering child to undergo chemotherapy on the basis that alternative remedies will cure them. The question must be whether the parents really do always act in their child's best interests - even where they believe that they are doing so.
Georgie Godby, UK

I am worried that many of the comments imply this is a dispute between parents who aren't medically trained, and doctors who are. In fact this is an argument between two sets of doctors: those who say the procedure is necessary and those who say it isn't. The parents choose to believe the latter, and that is their right. They are not "irrational" and it is insulting to suggest that they are.
Linda, UK

This is a baby not an experiment. If it is against the parent's wishes then this is wrong.
Laura D/J, UK

There is a clear distinction between patients capable of rational thought, who wish to die and therefore wish to stop further treatment and those who cannot agree to treatment but whose quality of life depends upon that treatment. In the case of the little girl, doctors are in the best position to decide, not the parents.
Andy Millward, UK

If the doctor's insistence at this operation leads to the child's death then should they also be held responsible?

Paul, England
I'm interested at the manslaughter comment. I'd like to put the other side, if the doctor's insistence at this operation leads to the child's death then should they also be held responsible. Too much pressure/guilt is put on those who really care where as when doctors mess up it's covered by "they were only doing their best". Like other professions they are not gods nor should they be treated that way. They give an expert opinion, which should be listened to and respected but that's it.
Reality is that most people will listen to them but we should have the choice not to. If they do force a decision, then they should be held totally accountable, and I mean totally. The decision must be put above the personal pride or arrogance of certain doctors none of whom are infallible.
Paul, England

The parents have to live with the consequences of their decision, not the doctors. It must, therefore, be the parents who decide what is best for THEIR child.
Andy W, UK

They should probably let the doctors decide

Matt, UK
Have either of the parents had any medical training? As the answer is no, they should probably let the doctors decide. If the doctors allowed the girl home and something happened to her, I'm sure the parents would blame the doctors.
Matt, UK

If parents have a complete veto over medical treatment for their children can someone please tell me at what point does the parent's refusal of medical treatment of their child become neglect and abuse?
Chris, UK

Why make the parents' life even more difficult? The medicine is not an exact science, the second or even third opinion should be given and discussed. No loving parent wants to harm his child! But the final decision should be theirs. I wish them the best of luck!
Jana C., UK

I'm so sick of doctors who THINK they know best. Ultimately the parents are the responsible parties for this child, both legally and morally. It is their right, to decide, after medical consultation, what is in the best interests of their baby. If this were the USA one would be tempted to assume that the procedure was suggested for wholly monetary purposes (i.e. to benefit the doctor), in the UK such monetary considerations are not supposed to enter in to it. If the baby travelled on an airplane successfully, then how is it deemed necessary to perform this surgery on her now in a controlled environment? The arrogance of the medical profession never ceases to amaze me!
Susan, UK/USA

I find it hard to believe that the parents would be refusing treatment if they thought it would benefit their little girl.

Emma, UK
My heart goes out to this baby's mother. My own daughter has been in hospital a few times during her short life and, while the staff treating her did the best they possibly could, they didn't always get it right. We have subsequently found that they misdiagnosed a potentially serious problem - which we, the parents, had already picked up on. I find it hard to believe that they (the parents) would be refusing treatment if they thought it would benefit their little girl.
Emma, UK

I think that it should be left to the parents to make all choices for their daughter. If it was my child I would care for her and allow her to have the least medical intervention possible. Medicine has achieved great things but ultimately it must be left to the parents to make any decisions regarding their own daughter. We all die in the end.
Frances Wilke, USA

As someone who works in a special care unit I have sympathy with both parties. As a health professional who knows and understands the problems to come I can fully understand the doctors stance. They have to think ahead to future treatments and issues whereas the parents currently only think of now. I think however that a tracheotomy is probably not actually a necessity now and the child is obviously coping without it. It is true however that if she deteriorates then the doctors will need to intervene quickly and effectively. therefore there is an argument for pre-empting the need. It is a difficult situation and maybe the doctors really need to listen at first to the parents fears and anxieties rather than overriding their wishes out of hand.
Mandy, UK

The mother was interviewed on BBC Radio 4 this morning and said she had spoken to several overseas consultants and experts in this condition and it was they that thought the operation was unnecessary. She said she had requested meetings with the hospital management several times but had been ignored. The biggest problem here is communication.
Iain, UK

It probably requires someone else to help them step back from the problem - if indeed that is possible with something as clearly emotive as this issue

S. Cunningham, UK
We are so very ready to jump on the authorities They have 'slapped' a restraining order on the parents against their removing the baby from hospital - but only because the parents have threatened this. The parents probably aren't being completely rational - although they may well be acting in accordance with their beliefs and their consciences. It probably requires someone else to help them step back from the problem - if indeed that is possible with something as clearly emotive as this issue. But, fundamentally, the needs of the child must be put first. If they are not willing to do that, then the child should be taken into other care. If the child will benefit more from this action than from it not happening, she should have it done. If it will give the medical personnel - and the parents - a little more breathing room to sort out the rest of her problems, there doesn't seem to be a good argument against it, surely.
S. Cunningham, UK

I think the ultimate decision must rest with the doctors as they know more than the parents about the medical conditions and dangers involved, parents may rush to make hasty decisions based on their emotions that may not be in the best interest of the baby's health.
Andrea Jenkins, Milano, Italy

Looking ahead...if this little girl is left with her terrible facial disfigurement, what is her own opinion on the current issue likely to be in fifteen years' time? Your answer is likely to provide the solution.
Chris B, England

It is obvious that the parents have their daughter's best interest at heart as they have already spent there whole life savings on her. It is the parents that would have to live with the guilt should the operation go wrong and if they were told that the operation was unnecessary and dangerous in the first place I don't blame them for feeling reluctant to allow for the operation to go ahead. In my opinion the parents need reassurance from specialists other than the one that has given mixed opinions about whether it is the right thing to do or not. I'm sure that if their confidence is restored they will make the appropriate decision.
Joanne, UK

Maybe it would be a good idea for the social workers or someone to bring in outside medical experts to give other opinions. It sounds like the situation is getting too heated to be resolved amongst the current parties.
Gwen, USA

At the end of the day who has to live with the baby?

Bec H, UK
At the end of the day who has to live with the baby? Raise it, look after it, live with any medical issues the baby has? The parents. Sometimes medical staff are so intent of thinking that they can do something, they stop to ask whether they should. They don't have to live day in day out with the results of their actions. They should make sure the Parents are fully aware of all the facts so that they can make an informed decision. But the decision must remain with the Parents, however much anyone else disagrees with them, it is THEIR child not the hospitals.
Bec H, UK

Perhaps this is down to a lack of communication between the doctors and the parents as there seems to be some confusion over the necessity of the tracheotomy. However, the final decision should lie with the parents rather than judges, social workers, and the police, who, in reality, are no better placed than the parents to take these decisions. Particularly the police - I see no reason why they should be involved at all.
Dave, UK

Ultimately the decision must rest with the parents. People have the right to refuse medical treatment for themselves and for any children too young to give informed consent. If we lose that right, then our kids could be forcibly inoculated with MMR.

The parents are refusing to give consent because a consultant at the hospital told them that a tracheotomy would be dangerous and unnecessary, which seems like a perfectly good reason. They have a severely damaged baby, and must be given a say in how much treatment she receives.
Emrys, Britain

The parents have the right to refuse the procedure when it is obvious the child does not need it. The hospital doctors are not always right and they do procedures sometimes which are unnecessary, otherwise why do we as parents have to sign the permission forms? They cannot have the control on us.
Jamila, UK

I don't have a medical degree, so I wouldn't question the doctor. These days people are far too ready to criticise people in authority, whether it be teachers, the police or doctors in this case. These people are experts in their field, and parental interference such as this must be extremely frustrating, irritating, costly and time consuming. Whatever the failings of the NHS, I have yet to hear anything which makes me think that the doctors and nurses act in anything other than the best interest of patients, and they should be allowed to do so freely.
Jon Cooper, UK

Instead of talking and co-operation authorities hide behind rules.

Tom Hughes, UK
This is a typical situation in Britain today, Instead of talking and co-operation authorities hide behind rules. They then claim the higher ground. It is telling that the hospital, police and social services are working together "in the child┐s best interest". Lots of resources will have been put in to this, but has anyone actually talked to the parents? If the operation needs doing so be it, but the professionals seem divided. So why the heavy hand? This case should be investigated further. But in the meantime some sympathetic communication should be done by the authorities.
Tom Hughes, UK

This surely has to be a case where the ignorance of the parents shouldn't be allowed to threaten the future well being of this child. If society in general has one overriding duty it is to protect it's young.
Brian, Isle of Man

Again there is little or no information regarding why the little girl needs surgery and why the parents believe it isn't necessary, although correcting conditions like cleft palate and other such facial deformities are less traumatic when done as early as possible on an infant. Living with facial deformity isn't easy, especially when the child gets to an age where it realises it's different. So, aren't the parents making the same proxy decision for the child as the surgeons are doing for the parents? Appearance is important - even if you think it isn't. It'd be great to think that society has moved on in this regard, but it hasn't, has it?
Alex, UK

Doctors, social workers, judges, and in general the government have far too much power and control over the people of the UK

Martina, UK
Doctors, social workers, judges, and in general the government have far too much power and control over the people of the UK. These individuals believe they have a god-given right to own every aspect of our lives - when are they going to mature enough to recognise that a democracy is contrary to their behaviour and beliefs. Democracy is about freedom; freedom is the empowerment of the individual and not the state. It appears we are not the owner of our own life, but are an asset of a state that can to do with us as they see fit. We can't even demand a decent dignified death - unless a judge, doctor, or social worker deems it appropriate.
Martina, UK

This is a very difficult call as it is easy to see both sides of the argument. However, I would be inclined to support the hospital's stance purely from the point of view that they are probably in a better position to make an objective call on the situation. The parents, understandably, are probably quite traumatised by what has happened and not perhaps at their most rational.
Shaun, Teignmouth, UK

If the operation is proved necessary - and do the baby's parents have medical training, and therefore, can they make that decision? - Then it must go ahead. If the parents remove their child from the hospital, and that leads to her death, surely this is manslaughter? Any parent who refuses an operation to save their child has to be looked at a little more closely. However, if the operation is unnecessary, then the parents are within their rights to take the child elsewhere for the treatment she needs. Who has decided the procedure is unnecessary?
S. Holt, England

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See also:

05 Mar 02 | England
Court action over baby
26 Feb 02 | England
Appeal to build baby's face
05 Mar 02 | G-I
Goldenhar Syndrome
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