Disabled baby must be kept alive, judge rules

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The Independent Online

A profoundly disabled baby boy should be kept alive on a ventilator despite the belief of doctors that his life is so intolerable that he should be allowed to die, the High Court has ruled.

In a landmark case, a judge refused to grant an NHS trust permission to override the wishes of the boy's parents and withdraw his breathing tube. Clearly moved, he addressed the parents directly, telling them it had been a "very great privilege" to meet them. He went on to thank the couple, adding: "It must have been agonising sitting there and wondering what I was going to say."

Charities and anti-euthanasia groups welcomed the ruling, saying it had stopped a trend "down a dangerous slope" towards a policy of withholding life-saving treatment from severely disabled people.

The boy, known only as MB for legal reasons, was born with spinal muscular atrophy, an incurable and degenerative muscle wasting disease that eventually causes total paralysis. He is unable to make any sound, breathe or swallow on his own, is fed through a tube and has to undergo several painful procedures every day to keep him alive.

Doctors wanted the High Court to grant a declaration that they could withdraw ventilation because it was unethical to continue treating the boy when he had such a poor quality of life.

The case is believed to be the first where doctors treating a patient who is physically disabled but not mentally impaired or in a persistent vegetative state have asked for permission to allow the patient to die.

The judge heard that 10 consultants on the unit, along with three independent experts, all agreed that MB should be allowed to die. But his 22-year-old mother and 29-year-old father, who have two other children aged four and five, insisted their son does have a quality of life. They told the judge that he enjoys being read stories and listening to songs.

Rejecting the trust's case yesterday, Mr Justice Holman paid tribute to the couple, saying MB was "blessed" in his relationship with them. While suggesting they were "deluding themselves" that their son's condition was improving, the judge said the benefits MB derived from contact with his family outweighed the burden of his pain and distress.

He said: "It is indeed a helpless and sad life but that life does in my view include within it benefits. It is impossible to put a mathematical or any other value on the benefits, but they are precious and real and they are the benefits M was destined to gain from his life.

"I do not think that the perceived advantage of a 'good death' can yet tip the scales so that the benefits of survival and life itself are outweighed."

The Royal College of Paediatrics and Child Health said the ruling helped to clarify what should be done in "incredibly rare and difficult cases".