Losing a child to spinal muscular atrophy

Paediatr Nurs. 2008 Apr;20(3):32-3. doi: 10.7748/paed2008.04.20.3.32.c6519.

Abstract

Spinal muscular atrophy (SMA) is a genetic disease that affects mostly children but also some adults. There are Types I, II, and III that affect children, and Type IV that affects adults. There is no cure or treatment. SMA sufferers lack a protein (SMN) that controls muscles, therefore muscles weaken, and in the most severe of cases death occurs. Research is ongoing to find a cure for SMA. This personal account by the mother of Matthew who died aged three months of spinal muscular atrophy aims to inform nurses about this life-threatening condition.

Publication types

  • Case Reports

MeSH terms

  • Adaptation, Psychological*
  • Home Nursing / methods
  • Home Nursing / psychology*
  • Humans
  • Infant
  • Infant Care / methods
  • Infant Care / psychology*
  • Male
  • Mothers / psychology*
  • Muscular Atrophy, Spinal / diagnosis
  • Muscular Atrophy, Spinal / genetics
  • Muscular Atrophy, Spinal / nursing*
  • Terminal Care / methods
  • Terminal Care / psychology*