Babies with spina bifida treated without surgery: parents' views on home versus hospital care

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. Sixty three survived for more than one week. Over the period the hospital's policy changed: 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 in 1985-6, five to 14 years later; 80 of them were asked how they felt about the lives and deaths of their babies. Eighteen babies had been taken home, and they had lived longer than the 26 who had been cared for in 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 their child's life. The figures suggest that the bereavement process after a baby's death is longer than has been thought, but despite residual sadness just over half of the parents interviewed thought that something positive had come out of their experience.