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Sunday 23rd October 2016

The case of Baby MB

2nd April 2006

03042006_scales1Q.jpgA judge at the High Court this month refused to rule that a 19 month old boy, known only as Baby MB, who has type 1 spinal muscular atrophy, be allowed to die.  He ruled that it would not be in the best interests of the boy to be taken off the ventilator that is keeping him alive. This was against the opinion of medical experts involved in the case.

Spinal muscular atrophy is a genetically transmitted disorder that causes weakness and sometimes paralysis of the muscles. There are three types - type one kills 80% of babies before they are a year old, while type two is described as life-limiting but some born with it live a reasonably fulfilling life into their 40s. Type three is mild, and life expectancy is unaffected. MB has type one.

The judge, Mr Justice Holman, allowed the proceedings to be heard in open court because of the importance of the issue. It was a landmark case as it is the first in which a trust has sought a declaration that life support for a child who is assumed to have normal cognitive functioning should be stopped.  Other cases have involved children with brain damage.

The trust had brought the case as they felt Baby MB had 'an intolerably poor quality of life, and that this will only get worse'.  Eight consultants caring for Baby MB told the court that he was suffering discomfort, distress, and pain from the medical procedures to which he was subjected. This was underlined by other expert witnesses and by the guardian appointed to represent the child's interest in court, who felt that the burdens of his existence outweighed the benefits.

However during the course of the hearing this was strongly disputed by his parents.  They said they know a side of the little boy that neither the doctors nor the impartial medical witnesses ever saw, reported the BBC. His parents said that he liked having his brother and sister sing to him, watching certain video and TV programmes, and listening to music.  They claimed that he registered this by raising his eyebrows and moving his fingers or toes very slightly.  The father, a Muslim, believes the life-or-death decision belongs not to man, but to God. Only God can decide when to take his son's life, he said.

Doctors have often met the parents to discuss what should be done for the child, but with the mother and father adamant that their child should continue to be kept alive they have been unable to agree, said the Times.  One doctor said he was troubled by the life-sustaining treatment he had been obliged to give to the child for some time. A consultant paediatric neurologist said that Baby MB was "the most severely affected child with SMA that I have personally seen", said the BMJ.

Giving his judgement, Mr Justice Holman did not dispute the medical evidence relating to the pain, distress and discomfort of Baby MB, but said he was not unconscious and was capable of bonding with his family. The judge was "not persuaded, even taking into account predicted future deterioration, that it is currently in the best interests of MB to discontinue ventilation with the inevitable result that he will immediately die".

However the judge warned that there were procedures which would subject Baby MB to further pain, and should not be carried out; cardiopulmonary resuscitation, electro-cardiograph monitoring related to cardiopulmonary resuscitation, intravenous antibiotics, or blood sampling.

In a statement, the trust caring for Baby MB said it was an extremely difficult case, and that they would now "consider the details of the ruling and how best to care for MB in the light of this decision, continuing to act in his best interest."

In the ethical debate surrounding this case Daniel Sokol, medical ethicist at Imperial College Faculty of Medicine notes that whilst commentators have expressed much sympathy for the parents, they have generally overlooked the moral challenges for the medical team. In the doctors' eyes, by continuing to treat Baby MB with painful and futile measures, they are treating a vulnerable child against his best interests and violating a basic tenet of medical practice: first, do no harm.

The problem with this case is that both parties agree that the doctors should act in the child's best interests. The principal point of disagreement rests on whether Baby MB is suffering intolerably. Suffering is a subjective attribute, which baby MB is unable to articulate.

Moral dilemmas in medicine will arise with growing frequency with the advancement of medical knowledge, the growing sophistication of drugs and machines, and the plurality of individual values in society. This makes the need for clinical ethics services in British hospitals more acute, says Daniel Sokol to the BBC. In the meantime, the courts are an appropriate place to resolve these complex and emotional cases.

The Royal College of Paediatrics and Child Health (RCPCH) concurs that that these decisions cannot be rushed, saying that "Each case involves an individual life and rigid rules cannot be imposed. In this case it was essential that there was a proper assessment of the child's quality of life." It also said that it accepts this judgment as it helps to clarify what should be done 'in incredibly rare and difficult cases.'

Dr Vivienne Nathanson, Head of science and ethics at the British Medical Association agrees that such tragic cases are, fortunately, very rare. "It is clear that both parties wanted the best for Baby MB, but differed on what was in his best interests" she said, concluding "when an agreement cannot be reached, the only way forward is for the court to make a decision."

The judge decided it was in his best interests to be allowed to continue life on the ventilator; "We must hope, for the child's sake, he has got it right." said Professor John Harris Medical ethicist, University of Manchester, to the BBC.

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