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

Journal title
Journal of paediatrics and child health
Publication year
2013
Author(s)
Gray, K.; Isaacs, D.; Kilham, H. A.; Tobin, B.
Pages
807-12
Volume
49
Number
10

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.

Research abstracts