Dominic Lawson: A paralysed infant has helped save the lives of some of our most vulnerable children

British judges are not impressed by the authority of the state, no matter how unpopular it may make them
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The Independent Online

As governments past and present have discovered to their fury, British judges are not impressed by the authority of the state, no matter how unpopular that may make them. Sometimes that refusal to be overawed can be magnificent: seldom more so than in the decision of Mr Justice Holman on Wednesday to refuse to grant an unnamed NHS Trust his consent to the removal of a ventilator tube from the nostrils of "Child MB".

Child MB, a 19-month-old boy, suffers from the most acute form of Spinal Muscular Atrophy. This degenerative disease - which affects the body but leaves the brain completely undamaged - has now rendered him inert, and he cannot breathe without the aid of a ventilator. His parents refused to give their consent to the trust's wish to remove his breathing aid - which would cause his immediate death - and so the trust attempted to use the law to overrule the parents' wishes.

Its submissions to the court were impressive, in that not only were the 12 doctors involved in the case united, but also the two doctors who gave evidence on behalf of the parents told the judge that in their view it was time for Child MB to "be allowed to die". Even the guardian to the child appointed by the court sided with the NHS Trust - and therefore the state. Yet Mr Justice James Holman listened politely and then told them that they were all wrong, and that the parents were right: Child MB's life was worth preserving.

As it happens, I know James Holman - his holiday cottage in the Scilly Isles is less than 100 yards from the one which we rent each August. James is one of those rare Englishmen who absolutely adores children. He is unstoppably affectionate not just to his own children, but to all those he meets. And unlike some adults, the children don't seem to mind the fact that his greetings boom so loudly that they can be heard on the next island. My point is that James Holman is the last man to be insensitive to any suffering experienced by Child MB.

As befits an obsessive sailor, James Holman did something very practical at the outset of the hearing: he asked all those involved to write down on a piece of paper a list of the benefits and disadvantages of the course of action they proposed.

In his judgment, Holman notes that "Even at the end of the hearing the list from the NHS Trust contains only one item [in favour of the child's continued existence]: 'Preservation of life.' It does not recognise any specific benefit that MB may be getting from his life although the disbenefits are listed in considerable specific detail."

I am not surprised that James Holman was puzzled by this. As he points out, after detailing the medical evidence: "MB is conscious. He is awake during most of the day and sleeps at night. He continues to hear, see, feel and touch, to have an awareness of his surroundings and of the people who are most close to him, his family, and to have the normal thought processes of a small child of his age... No court has before been asked to approve that, against the wishes of a child's parents, life support may be discontinued, leading to the inevitable death of a child with sensory awareness and assumed normal cognition, and no reliable evidence of brain damage."

As to the suffering of Child MB, the doctors told the court: "It is very difficult to assess how much distress he experiences. It is inevitable that some interventions, particularly blood sampling, endotracheal suctions and physiotherapy are uncomfortable to him. An assessment of his quality of life is very difficult."

In essence, therefore, the consultants are saying that they have no idea how much MB is suffering, or how happy or sad he is. Only the medical staff who have spent most time with MB, the junior nurses, made it clear that they were against the trust's court action. The mother, who has been with him in hospital for at least eight hours a day throughout his entire life, told the court that not only does the corner of his mouth turn up when he sees his two brothers, but also when he watches Barney the Dinosaur on television.

She also told the court that he wiggles his toes when she tells him "to do a big one". James Holman saw a video of this, to verify that the mother was telling the truth, and comments: "The doctors who have seen the video say that they have not witnessed any such movements, but they agree they are visible in the video and cannot explain them."

In conclusion, James Holman told the court - and I can imagine the booming tones in which this was uttered - "I can not and will not make a declaration in the terms sought. I actually go further and consider that it is actively in MB's best interests to continue with ventilation and with the nursing and medical care that properly goes with it." Case dismissed.

In his column last week, Johann Hari argued that the NHS Trust was right to seek to disregard MB's parents' wishes, on the grounds that he is "in ceaseless agony" and that we should abandon "the sanctity of life rhetoric, a leftover from the rotting carcass of Judaeo-Christian philosophy... Of course it is much easier to accuse anybody who tries to craft the least cruel form of ethics of being a mini-Mengele".

Well, I shan't accuse Johann of being a mini-Mengele, although I do think he ought to read Michael Burleigh's Death and Deliverance. It is an account of the systematic murder of almost 200,000 mentally or physically handicapped people by doctors under the Nazi regime.

The Nazis produced films to persuade the German public of the virtues of this policy. The voice-over of one, accompanying footage of severely handicapped children, declares, in scandalised tones: "They have to vegetate in an existence which no longer has anything in common with the purpose of human life. They must, because a religion which is alienated from reality has given rise to medical ethics, still current today, which make it the task and duty of the doctor to preserve the life of every person under all circumstances."

Johann favours lethal injections for those he thinks should be let go, but the Nazi film instead proposes the "humane and painless" operation of a gas chamber: this was the trial run of the method later used to exterminate the Jews.

I wish Johann the best of luck as he tries to craft his very own form of ethics, but I'm grateful to James Holman for ensuring that English law remains, at least as regards compulsory euthanasia, tied to Judaeo-Christian philosophy.

And as for Child MB: his short life is now anything but meaningless. With the aid of his mother's stubbornness and love he will go down in legal history as the person who, unwittingly, helped to preserve the lives of the most vulnerable children of all.

d.lawson@independent.co.uk

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