Beyond the heart: supporting development in children and adolescents with complex CHD

Children and adolescents with complex congenital heart disease (CHD) face a high risk of neurodevelopmental challenges, including motor, language, cognitive, behavioural, and socio-emotional difficulties. Although the American Heart Association released statements in 2012 and 2024 outlining risk-stratified follow-up recommendations, access to systematic developmental monitoring remains limited in Canada. Only half of centers performing pediatric cardiac surgery offer structured follow-up, and services rarely extend beyond early childhood, despite evidence that many difficulties emerge at school age or adolescence. Neurodevelopmental concerns span motor delays, language impairments, executive dysfunction, attention deficits, learning disorders, and elevated rates of anxiety, depression, and behavioural problems. These challenges are more pronounced in children with severe CHD and in socioeconomically disadvantaged families, and are associated with parenting stress and parental mental health. This commentary aims to raise awareness among Canadian health care providers, support early identification, and guide appropriate referral pathways to the complex developmental needs of CHD survivors.