This case discusses a judge’s decision over whether to advise that a baby with haemophagocytic lymphohistiocytosis should have painful and invasive treatment in order to give her a 50% chance of life
NHS Trust v A  1 FLR 70,  1 FCR 34, Holman J
A six-month-old baby girl suffered from haemophagocytic lympho-histiocytosis (HLH), a genetic defect in the immune system which causes a viral infection to trigger an abnormal and massive overproduction of the body’s scavenger cells, which then invade and literally eat into vital organs such as the liver, bone marrow and brain. She lived happily at home in a loving, caring and devoted family, but without treatment would die within a year or so.
The only effective treatment, a bone marrow transplant, gave her a 50% prospect of a lasting cure and a normal life expectancy, but a prospect of dying during the treatment, a prospect of failure, and a prospect of surviving with significant impairment. The treatment was lengthy, painful and distressing. Her parents thought that she should not undergo it, but should enjoy such life as remained to her.
The doctors and the child’s guardian disagreed, and asked the court for leave to carry out the treatment. The guardian said: ‘She should be given the chance of life rather than the certainty of death.’
The judge said: ‘The stark and awesome question for me is: should I approve and authorise this very significant and invasive treatment which the doctors so strongly recommend, or respect and endorse the well-informed and long-considered judgement and decision of loving parents? The issues are truly ones of life and death, but the case also raises profound issues of parental autonomy in our society.’
The judge held that the matter had to be decided by the application of an objective approach or test, ie the best interests of the child, including medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations. These were impossible to weigh mathematically, but the court had to do the best it could to balance all the conflicting interests. A very strong presumption must be attached to the prolongation of life, because the individual human instinct and desire to survive is strong, but it is not absolute, nor necessarily decisive, and may be outweighed if the pleasure and quality of life are sufficiently small, and the pain and suffering or other burdens of living are sufficiently great.
He referred to Re J (A Minor) (Wardship: Medical Treatment)  1 FLR 366, in which Lord Donaldson said: ‘Account has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment. Even very severely handicapped people find a quality of life rewarding, which to the unhandicapped may seem manifestly intolerable. People have an amazing adaptability. But in the end there will be cases in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause it increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s, and mankind’s desire to survive.’
After pointing out that the views and opinions of both the doctors and the parents had to be carefully considered, the judge said that the parents’ wishes, however understandable in human terms, were wholly irrelevant to consideration of the objective best interests of the child, save to the extent in any given case that they might illuminate the quality and value to the child of the child-parent relationship.
He weighed the disadvantages or burdens of treatment with the benefits. There was, first, the certainty of some, and possibly considerable, pain and suffering. But children do stoically endure, and this might to a considerable extent be managed. There was, second, the statistical possibility that the child might die as a result of the treatment, and this weighed very heavily with him. And third, there was the possibility that all would be in vain, after a futile period of pain and suffering and hospitalisation away from her warm and loving home. But the potential benefit to her would be not merely prolongation of life by a few months or years, but the prospect of a full, whole life into adulthood, with a normal life expectancy. In conclusion, the judge said that he had been deeply impressed by the parents who had been in intimate and constant contact with the child, had witnessed her suffering, and knew her happiness and contentment at home, but that he had become convinced that it was in her overall best interests to undergo the treatment.
In his view, a 50% prospect of a full, normal life, when set against the certainty of death before the age of one or one and a half, did outweigh all the other considerations and disadvantages. If the opportunity of the treatment was not taken, a very real prospect of a full life, weighed against certain death, would have been lost for a few more months of babyhood. She was more than a baby. She was a living human being, with a future as well as a present, to whom, despite her disease, modern medicine and science might be able to give a full life.
When thinking of the abuses which have been committed in the past in the name of eugenics or the health of the ‘race’, particularly the murder of the handicapped or disabled by the Nazis, it is refreshing to consider the enlightened and pro-life approach of the modern court.
Michael Segal has been a district judge of the Principal Registry of the Family Division since 1985. This is a specialist family court and about two-thirds of its work concerns disputes about children.
The cases presented here aim to help the reader understand better the nature of and the types of decision making within the court system.