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Spinal muscular atrophy type 1: Is long‐term mechanical ventilation ethical?
Author(s) -
Ryan Monique M,
Kilham Henry,
Jacobe Stephen,
Tobin Bernadette,
Isaacs David
Publication year - 2007
Publication title -
journal of paediatrics and child health
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.631
H-Index - 76
eISSN - 1440-1754
pISSN - 1034-4810
DOI - 10.1111/j.1440-1754.2007.01052.x
Subject(s) - medicine , spinal muscular atrophy , term (time) , mechanical ventilation , physical medicine and rehabilitation , atrophy , pathology , disease , physics , quantum mechanics
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.