Should a Sentient Baby be Allowed to Die?

Lawyers for a hospital trust are seeking permission to withdraw medical treatment that is keeping a one-year-old child alive. The boy, who was born with a rare neuromuscular condition, relies on a ventilator to breathe.

In previous cases, the courts have allowed doctors to withdraw treatment – including nutrition and hydration – from patients with severe brain damage. But if this application is successful, it would be the first case in which a court had ruled that life support could be withdrawn where there was no mental disability.

A freelance reporter writing for the Sunday Telegraph disclosed that the one-year-old, known only as Baby RB, was born with congenital myasthenic syndrome, a muscle weakness that severely limits the movement of his limbs and the ability to breathe independently.

Lawyers for the father say the baby’s brain is unaffected by the condition, so that he can see, hear and feel and recognise his parents. He is also able to play with toys and enjoy stories and music, they say.

Chris Cuddihee, the father’s solicitor, confirmed this afternoon that he was acting for the father, who is separated from the boy’s mother.

The Sunday Telegraph report said that the hospital’s application to take RB off the ventilator was supported by the boy’s mother and opposed by RB’s father. But Mr Cuddihee said the parents were “not at war over their son’s future”.

He added: “They remain amicable and are interested only in RB’s welfare.”

The High Court Family Division will have to decide what treatment would be in RB’s best interests. It will take advice from CAFCASS – the government agency that represents the interests of children in court.

The father is understood to believe that a tracheostomy – a permanent opening in the windpipe – would enable the baby to be ventilated at home.

But the hospital is said by the father to take the view that the baby’s quality of life is so low that it would not be in his best interests to continue ventilating him.

There is no independent confirmation of the hospital’s position.

Mr Cuddihee previously acted for the parents of a critically-ill baby known as OT. In March this year, the Court of Appeal refused the baby’s parents permission to appeal against a High Court ruling allowing a hospital to turn off his ventilator. As a result, OT died at the age of nine months.

Unlike RB, OT had suffered brain damage and it was this that prevented him from breathing unaided.

The appeal judges said:

The unanimous evidence before the judge was that OT was likely to suffer further strokes, which would permanently destroy other areas of his brain, and that it was highly likely that, whatever procedures were undertaken, however active and interventionist their nature, he would probably die prior to reaching the age of three and certainly die prior to reaching the age of five.

In March 2006, Mr Justice Holman refused to allow a hospital to stop ventilating MB, a boy of 18 months who was suffering from spinal muscular atrophy. However the judge made it clear that the hospital should withhold “procedures which go beyond maintaining ventilation, which require the positive infliction of pain and which, if required, will, in my view, mean that MB has moved naturally towards his death despite the ventilation”.

Mr Justice Holman said

this is a very fact specific decision taken in the actual circumstances as they are for this child and today. These circumstances include, critically, the facts that he already has been and is on ventilation and has already survived to the age of 18 months; is assumed not to be brain damaged; is in a close relationship with a family who have spent and are able to spend very considerable time with him; and does already have an accumulation of experiences and the cognition to gain pleasure from them.

The judge hearing the RB case tomorrow may also consider the Court of Appeal’s ruling in October 2005 in the case of Charlotte Wyatt, who was born in October 2003 at 26 weeks gestation and weighing 458 grammes (about 1 lb). Her neurological condition was “as bad as it could be”.

However, that case was not about whether treatment could have been withdrawn from Charlotte, causing her death. The courts had been asked to consider what should happen if Charlotte contracted a life-threatening infection and needed to be ventilated to save her life; she had chronic lung disease as a result of her premature birth.

Lord Justice Wall said:

The judge must decide what is in the child’s best interests. In making that decision the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient. There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term “best interests” encompasses medical, emotional, and all other welfare issues. The court must conduct a balancing exercise in which all the relevant factors are weighed and a helpful way of undertaking this exercise is to draw up a balance sheet.

Charlotte Wyatt, now six, has been living with foster parents after her parents separated. Interviewed for the Mail on Sunday in March, her father Darren Wyatt said Charlotte still needed a little oxygen every day but she loved listening to nursery rhymes and could now stand and walk with the help of a walking frame.

The doctors told me Charlotte had only a one per cent chance of surviving and getting better, but I knew they were wrong… Every time I see her I am just so pleased I went to court against all the wishes of the medical profession.

Her sight is improving with the help of the glasses she wears and she goes to a special school several days a week. She gives every impression of being a very happy, lovely little girl.

It may be some time before the High Court decides what should happen to RB. Any decision is likely to be challenged in the Court of Appeal and perhaps also the Supreme Court. In the meantime, the hospital would be expected to continue with the baby’s treatment.

There is a court order in force to prevent identification of the hospital, NHS trust and medical staff caring for RB. It also protects the identity of RB and his family.



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