Longer-term survival and health outcomes for children living with congenital heart defects

As mortality after major cardiac surgery in early childhood falls, it becomes clearer that there is a high prevalence of ‘non-cardiac’ problems in survivors. Patient support groups for cardiac children have long lobbied for better access to general paediatric expertise and upcoming organizational changes underwrite this. Motor and cognitive deficits as well as emotional and behavioural difficulties may need addressing; all impact the child's quality of life. Participation in exercise-based activities and quality of life correlate poorly with disease severity, except at the worst end of the spectrum of heart disease. Cardiac function as measured objectively poorly predicts children's activity in daily life and some children are actively limited by personal habit or family concern, which is often inappropriate. Enough is now known about the prevalence of problems that survivors of childhood cardiac surgery experience in the education system that support may be justified, even when the original cardiac condition is no longer an ongoing problem.