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

Kelly Gray, David Isaacs*, Henry A. Kilham, Bernadette Tobin

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

27 Citations (Scopus)


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.

Original languageEnglish
Pages (from-to)807-812
Number of pages6
JournalJournal of Paediatrics and Child Health
Issue number10
Publication statusPublished - 1 Jan 2013
Externally publishedYes


  • autonomy
  • benefit and burden
  • quality of life
  • withdrawal of treatment


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