Parents of children with congenital cardiac disease suffer from psychological stress and financial burdens. These costs have not yet been quantified.

In cooperation with paediatricians, social workers, and parents, a questionnaire was devised to calculate direct non-medical and indirect costs. Direct non-medical costs include all costs not directly related to medical services such as transportation. Indirect costs include lost productivity measured in lost income from wages. Parents were retrospectively queried on costs and refunds incurred during the child’s first and sixth year of life. The questionnaire was sent out to 198 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.

Fifty-four families responded and could be included into the analysis (27.7%). Depending on severity, total direct non-medical and indirect costs in the first year of life ranged between an average of €1654 in children with no or mild (remaining) cardiac defects and an average €2881 in children with clinically significant (residual/remaining) findings. Mean expenses in the sixth year of life were as low as €562 (no or mild (remaining) cardiac defects) and as high as €5213 (potentially life-threatening findings). At both points in time, the highest costs were lost income and transportation; and day care/ babysitting for siblings was third.

Families of children with congenital cardiac disease and major sequelae face direct non-medical and indirect costs adding up to €3000 per year on average. We should consider compensating families from low socioeconomic backgrounds to minimise under-use of non-medical services of assistance for their children.