To determine health-related quality of life (HRQoL) in 1-year-old infants with congenital heart disease (CHD), to follow-up with these children at age 4 years, and to examine predictors of HRQoL.

Parents of 144 infants who had undergone cardiopulmonary bypass surgery for CHD before age 6 months were prospectively included in this cohort study. Parents completed a standardized questionnaire on child HRQoL at 1 year and 4 years of age; medical data were extracted from the patients' hospital records.

Parents reported a significant reduction of the children's physical functioning compared with healthy controls at age 1 year. At age 4 years, children with CHD had poorer cognitive functioning but better social functioning compared with healthy controls. Lower HRQoL at age 4 years was not significantly predicted by univentricular or biventricular CHD but was predicted by the presence of an underlying genetic defect, tube feeding at 1 year, and lower HRQoL at 1 year.

This study shows that HRQoL of infants and preschool-age children with CHD is impaired in physical and cognitive dimensions. Children with lower overall HRQoL at age 1 year, an underlying genetic defect, and tube feeding need to be monitored carefully to provide appropriate and timely interventions.