Spinal muscular atrophy type 1: is long-term mechanical ventilation ethical?

Spinal muscular atrophy type 1: is long-term mechanical ventilation ethical?

Ryan MM; Kilham H; Jacobe S; Tobin B; Isaacs D

Journal Of Paediatrics And Child Health

2007

Humans; Intensive Care Units; New South Wales; Respiration; Spinal Muscular Atrophies of Childhood; quality of life; Pediatric; ICU Decision Making; Artificial/ethics

We present a baby with spinal muscular atrophy type 1, an inherited disorder causing progressive weakness, leading to complete paralysis of respiratory, facial and limb muscles. Without intervention, death occurs in infancy due to respiratory failure. Mechanical ventilatory support can prolong life, but the child's quality of life is highly debatable. We discuss the appropriateness of initiating and continuing intensive care for this child and others in a similar position.

2007

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