Spina bifida: feelings, opinions and expectations of parents

Interviews with sixty-seven parents of spina bifida children show that a common problem is "shared parenthood" which, in turn, contributes to the child's difficulty in finding its own identity. The history of the parents after the birth of an affected child follows a pattern typified by "breaking points." At these points the parents reformulate the aim of management. When the physicians are unaware of these new aims and continue their regular treatment, they make it impossible for the parents to face the incurability of their child. This gives the physicians a continued responsibility, not unlike the decision to treat after birth.