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FWD: Baby's life intolerable, court hears

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  • Keith Armstrong
    A 17-month-old boy at the centre of a landmark right-to-life case has an intolerable life , the high court heard today. The boy, who can be named only as MB,
    Message 1 of 1 , Mar 6, 2006
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      A 17-month-old boy at the centre of a landmark right-to-life case has
      an "intolerable life", the high court heard today.

      The boy, who can be named only as MB, suffers from spinal muscular
      atrophy - an incurable and progressively worsening condition that
      leads to complete paralysis.

      The court heard that he cannot breathe for himself, cannot chew or
      swallow, is fed through a tube and, though he is not impaired
      mentally, can move only his eyebrows, feet and fingers, and these very

      An unnamed hospital trust has asked Mr Justice Holman for permission
      to withdraw life-saving ventilation from the child because he has such
      a low quality of life.

      It is believed to be the first time that such a move has been taken in
      the case of a patient who is sentient rather than in a persistent
      vegetative state.

      His parents, from the north of England, want their son to live.
      They say he can recognise and respond to them and enjoys spending time
      with his family, meaning that he has a reasonable quality of life.
      A court order is in place preventing the identification of any of the
      parties in the action.

      Questioned by Caroline Harry Thomas, counsel representing the child's
      interests, a Dr S told the court today: "One has to consider his
      inability to move and his inability to communicate effectively; his
      inability to express his wishes, his inability to show if he is in any
      pain or distress or, if he is, what is causing that.

      "I think the cumulative effect of all of that is that he has an
      intolerable life."

      The doctor predicted that over the next few months, the boy would be
      unable to open his own eyelids.

      Another doctor, also designated as Dr S, described the boy as a
      "fragile" child who would die within minutes if ventilation were

      He was referred to a video, seen by the judge, in which the child
      appeared to move his foot in response to his mother's request.
      Dr S said he was very surprised by what he had seen, and neither he
      nor his medical colleagues had witnessed such a movement.
      "He is a profoundly disabled child who will remain so, and there has
      not been any significant change to his condition," Dr S said.
      The judge asked if Dr S would regard it as acceptable medically and
      ethically to continue ventilation but not to resuscitate, should the
      child go into collapse - as he did in October, when he was
      resuscitated and invasively ventilated.

      The doctor replied: "I think the decision to continue specific
      treatment would not be in his best interests.
      "I have been feeling that what I have been doing as a doctor has been
      wrong for many months, which is a very difficult position for me to be in.
      "That is not just my opinion, but the opinion of many medical
      professionals who are directly involved in his care.
      Dr S added that he would find it "difficult" if were asked to
      resuscitate the boy.

      MB's mother has said: "We want our son to have a tracheotomy so we
      could take him home and give him a life instead of him being stuck in
      a hospital cubicle.

      "We are very hopeful we can persuade the court that his quality of
      life is good enough so that treatment should not be withdrawn."

      Press Association Monday March 6, 2006

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