Parents’ Experiences of Having a Baby With a Congenital Heart Defect and the Child’s Heart Surgery

The incidence of children born with congenital heart disease is 1%. Congenital heart disease is among the birth defects that lead to the longest hospital stays, and children with congenital heart disease often require frequent hospitalization and several heart operations, along with lifelong follow-up visits. This study aims to describe parents’ experiences when their child has a heart defect and undergoes open heart surgery. A total of 10 parents were interviewed: 8 mothers and 2 fathers. The interviews took place 2 years after the heart surgery. The interviews were analyzed using a content analysis method, which resulted in 4 categories: maintaining belief, experiencing the surgery as a turning point, experiencing the pediatric intensive care unit with anxiety and fear, and perception of support. When parents face their child having a congenital heart defect and plan heart surgery, the whole family is living through a stressful time and has to handle many difficult situations. Parents need support from the health care team.