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      Spinal muscular atrophy type I: do the benefits of ventilation compensate for its burdens?

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          Abstract

          We report the progress of an 8-year-old child with spinal muscular atrophy (SMA) type 1. The parents elected in infancy that the child should be on long-term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated in the hospital. The leader of the long-term ventilation team reports on the child's progress and describes a week in the child's life. Two paediatricians argue that the benefits of long-term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long-term ventilation now. They argue that long-term ventilation might have been avoided by applying to a court of law when the child was an infant. An ethicist discusses ethical aspects of decision-making in SMA type 1.

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          Author and article information

          Journal
          J Paediatr Child Health
          Journal of paediatrics and child health
          1440-1754
          1034-4810
          Oct 2013
          : 49
          : 10
          Affiliations
          [1 ] Children's Hospital at Westmead, Westmead, Australia.
          Article
          10.1111/jpc.12386
          24131113
          © 2013 The Authors. Journal of Paediatrics and Child Health © 2013 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

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