Babies With Spina Bifida Treated Without Surgery: Parents' View on Home Versus Hospital Care
BMJ (British Medical Journal). 1988 Nov 12; 297(6658): 1230-1233.
From 1971 to 1981, 98 babies born with meningomyelocoele at the North Staffordshire Hospital Centre's district maternity hospital, were thought not suitable for surgery...initially all such babies were kept in hospital, but later parents were given the choice of taking their baby home for palliative and terminal care. In an attempt to determine parents' views on the care of their baby the parents of 44 of the babies who survived to one week were traced...80 of them were asked about how they felt about the lives and deaths of their babies. Eighteen babies had been taken home, and they lived longer than the 26 who had been cared for in the hospital. Parents whose baby had remained in hospital were sadder than those who had taken their baby home when they looked back at their experiences, and they also considered that their baby's life had been of poor quality. Most of those who had taken their baby home had a more positive view of the child's life.
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Babies With Myelomeningocele in Poland: Parents' Attitudes on Fetal Surgery Versus Termination of Pregnancy Koszutski, Tomasz; Kawalski, Henryk; Kudela, Grzegorz; Wróblewska, Jolanta; Byrka-Owczarek, Katarzyna; Bohosiewicz, Janusz (2009-02)