Objectives Parents of children with congenital heart disease (CHD) suffer from psychological stress and financial burdens, both direct and indirect. The latter has not yet been quantified.

Methods In cooperation with paediatricians, social workers and parents, a questionnaire was devised to calculate indirect costs. Indirect costs include all costs not directly related to medical services such as transportation, lost income from wages, etc. Parents were queried on costs and reimbursements incurred during the child’s first and sixth year of life. The questionnaire was sent out to 201 families with children born between 1980 and 2000. Costs were adjusted for inflation to the year 2006. Children were stratified into five groups according to the severity of their current health status.

Results 55 families responded (27.7%). Depending on severity, total indirect costs in the first year of life ranged between €9 (no residual defect) and €4175 (clinically relevant residual defect). Expenses in the sixth year of life were as low as €989 (no residual defect) and as high as €6541 (life threatening with exercise). At both points in time, the highest costs were lost income and daycare for siblings; transportation was third.

Conclusions Families with children with CHD and major sequelae face indirect costs adding up to €3000 to €5000 per year on average. We should consider compensating families from low socioeconomic backgrounds to minimise the underuse of non-medical services of assistance for their children.