Reactions of Families to the Death of a Child With Congenital Heart Disease

Abstract

We interviewed 57 parents of 33 children who died of congenital heart disease to obtain their descriptions and perceptions of their own grief. Irrespective of the child's age or length of illness, the parents consistently described a grief reaction characterized by an initial period of shock lasting hours to several weeks which evolved into a four- to six-month period of sadness/depression with somatic complaints, which slowly progressed to resolution through acceptance. No parent described symptoms of pathologic grief. Only four of 33 surviving siblings demonstrated recognizable problems at the time of follow-up. There was physician follow-up of 15 families; only two families received follow-up from local physicians, even though nine children died at home or in community hospitals. All parents expected follow-up and accepted it when offered. Specific follow-up recommendations are made.