Monitoring Developmental Risk and Promoting Success for Children With Congenital Heart Disease: Recommendations for Cardiac Neurodevelopmental Follow-Up Programs

Survival of children born with complex congenital heart disease (CHD) has improved dramatically in recent years. However, research studies document high rates of neurologic abnormality and neurodevelopmental impairment in this patient population. The American Heart Association (AHA) and American Academy of Pediatrics (AAP) recently released guidelines for developmental screening, surveillance, and evaluation of children with CHD. The AHA and AAP jointly developed the guidelines in light of increased awareness of long-term cognitive, behavioral, and social sequelae of CHD and the underutilization of remedial services and supports that address these concerns. The guidelines provide an impetus for hospitals to incorporate formal neurodevelopmental follow-up as an integral component of cardiac care. Existing cardiac neurodevelopment programs are rapidly emerging in the United States, Canada, and abroad. Members of the Society of Pediatric Psychology’s Cardiology Special Interest Group collaborated in this effort to describe the essential components of cardiac neurodevelopmental follow-up programs, review implementation and program development challenges, and consider future directions for the field of cardiac neurodevelopment.