05 November 2009

The heartbreaking case of Baby RB

I understand the mother’s desire to protect Baby RB - but doctors, after all, can be wrong, writes Liz Hunt.

By Liz HuntPublished: 6:53AM GMT 04 Nov 2009

It’s a tug-of-love case like no other. In one corner is a mother who wants her baby son to die. She believes it will save him from a life of suffering caused by a rare neuromuscular condition that means he may never move independently, and requires assistance to breathe. In the other is a father who wants the child to be given a chance, at least, of life.

In the middle sits a judge who, once lawyers, ethicists, and medics have had their say, must pronounce on Baby RB’s future. Surely Solomon had an easier decision than that faced by Mr Justice McFarlane.

For those observing this High Court drama who are swayed neither by religious belief, nor by a faith in the absolutism of medical opinion that holds Baby RB as a lost cause for whom a humane exit is the only option, it’s a tortuous intellectual and emotional debate.
I find myself ricocheting between the two positions, both of them informed by awareness of the long hours the devoted parents have spent at the child’s bedside in the 13 months since his birth. His mental development is believed to be unimpaired; the court heard yesterday claims that he responds to those around him, will wriggle his body in pleasure, and can interact with toys or when stories are read to him.

So, yes, I understand the mother’s desire to protect him. A peaceful, drug-soothed death is surely preferable to the “pitiful existence” experts say lies ahead. But how hard it is not to sympathise with the father’s refusal to deny his child an existence at all by withdrawing ventilation, as the doctors want. Doctors can, after all, be wrong.

This is not the first time that a court has been asked to decided whether a very disabled child should live or die. In 2004, in the first case of its kind, 10-month-old Charlotte Wyatt’s life was the focus of a high-profile legal battle. Born at 26 weeks, her brain was under-developed and her hearts and lungs damaged so that she had to be supplied with oxygen. Doctors wanted to let her die, rather than resuscitate her, as they had done five times previously when her breathing failed. Blind and deaf, her suffering had reached “an unbearable level”. Her chance of surviving another year was “approximately zero”.

Charlotte’s parents disputed this assessment. They said their daughter enjoyed cuddles, reacted to her musical toys, and loved to be bathed. In short, they felt she had a worthwhile quality of life, and every intervention should be made to prolong it. A judge ruled in favour of the doctors and a do-not-resuscitate order was put in place. In the event, it was not needed, Charlotte survived, confounding the experts. It was a triumph over tragedy – of sorts. Her parents split up, and she is now believed to be in the care of foster parents.

There are similarities between the cases: the damning medical prognosis, the insistence that the baby’s life is not without comfort. But there is also a fundamental difference: should the judge find in favour of his mother, and of the NHS trust that cares for Baby RB, it will be the first time that a British court has ruled against the wishes of a parent (the baby’s father) whose child does not have brain damage.

This is the fulcrum on which the debate pivots. Michael McClonas, for the NHS trust, has argued that Baby RB’s “awareness” will make his plight unbearable, “not so much now, but as he gets older and catches glimpses of what others can do”. What dangerous presumption that statement contains; that a child should be helped to die because of what might lie ahead, that his very sentience might seal his fate.

To how many others might that argument have been applied: The late writer and cerebral palsy sufferer Christy Nolan? Perhaps even Professor Stephen Hawking, who developed a debilitating illness in early adulthood? I am not an advocate of life at any price, but Baby RB’s is worth more than this.

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