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With improved surgical and medical management of congenital heart disease (CHD), most patients now survive into adulthood. In addition to ongoing physical health problems, children with CHD are at risk for developmental, behavioral, and mental health challenges. This article aims to increase the general pediatrician's understanding of the phenotype of neurodevelopmental impairment in children with CHD, individual risk stratification, current national screening and evaluation guidelines, and targeted intervention strategies to mitigate neurodevelopmental risk.
Neurodevelopmental Outcomes in Children with Congenital Heart Disease
The development of children with CHD can be broadly impacted (Figure 1). For the purposes of this article, we discuss childhood development across 4 overlapping domains: cognitive, motor, language, and social-emotional.
Cognitive Development
Cognitive development encompasses a child's ability to pay attention, learn, problem solve, be creative, think abstractly, and acquire self-care skills. It is key to academic achievement. Studies show that mean intelligence quotient (IQ), a popular metric of intellectual ability, falls in the normal range for children with CHD but is overall 4 to 5 points lower than the normative mean and 7 to 12 points lower in children with single ventricle heart disease.1 In early childhood, children with CHD also exhibit lower cognitive testing scores than the general population.2,3 Low birth weight, genetic predisposition, and lower maternal education level are associated with worse performance. 2,3 Children with CHD have lower executive functioning performance, especially in the areas of problem solving, cognitive flexibility, and verbally mediated skills.4 Children with CHD, particularly those with complex CHD, have worse academic performance and higher utilization of special education programs than their peers without CHD.5,6 Additionally, there are significantly higher rates of attention-deficit/hyperactivity disorder in children with CHD.7
Motor Development
Both gross and fine motor development can be impacted in children with CHD.8 Motor development impairment in children with CHD is evident from a very young age, with even newborns displaying abnormal oral motor and gross motor function.9,10 A large, multi-institutional study of children who underwent cardiac surgery with cardio-pulmonary bypass in infancy found lower developmental testing scores for motor function compared to the general population.2 Children with single ventricle heart disease are at higher risk for abnormal motor development.3,10 Additionally, there is an...