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Judge rules that baby boy should not be allowed to die

BMJ 2006; 332 doi: https://doi.org/10.1136/bmj.332.7543.685 (Published 23 March 2006) Cite this as: BMJ 2006;332:685
  1. Clare Dyer, legal correspondent
  1. BMJ

    A judge at the High Court in London last week refused to rule that an 18 month old boy with type 1 spinal muscular atrophy be allowed to die, against the unanimous opinion of medical experts involved in the case.

    Mr Justice Holman ruled that it would not be in the best interests of the boy, named only by his initials MB, to be taken off the ventilator that is keeping him alive.

    The case 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.

    MB, who was described by a consultant paediatric neurologist as “the most severely affected child with SMA [spinal muscular atrophy] that I have personally seen,” is almost completely paralysed. He can move his eyes and make “barely perceptible” movements with his eyebrows, the corners of his mouth, thumbs, and toes.

    He cannot cry, breathe, or swallow and is kept alive by artificial ventilation through an endotracheal tube and is fed through a gastrostomy tube. The judge said he would probably die within a year.

    Eight consultants in the team caring for MB told the court that he was suffering discomfort, distress, and pain from the medical procedures to which he was subjected. They said he had “an intolerably poor quality of life, and this will only get worse.”

    Their opinion was backed up by other expert witnesses and by the guardian appointed to represent the child's interests in court, who agreed that the burdens of his existence outweighed the benefits.

    But the judge heard from the boy's parents that he enjoyed lengthy visits from them and liked having his brother and sister sing to him and play tickling games with him, watching videos, and listening to music CDs.

    Mr Justice Holman said he 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, he said that the boy should not be subjected to further procedures requiring the positive infliction of pain: cardiopulmonary resuscitation, electro-cardiograph monitoring related to cardiopulmonary resuscitation, intravenous antibiotics, or blood sampling.

    The judge said he accepted that MB's life was “helpless and sad,” with “almost relentless discomfort, periods of distress, and relatively short episodes of pain.”

    But he continued to have a relationship with his family and continued to gain pleasure from touch, sight, and sound. Those benefits were “precious and real” and were the only benefits the child was “destined to gain from his life.”

    The unnamed NHS trust in the north of England said it would “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 interests.”

    The Royal College of Paediatrics and Child Health said it accepted the judgment as helpful in clarifying what should be done in “incredibly rare and difficult cases.”

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