Supporting Development in Children With Congenital Heart Disease
Children with congenital heart disease (CHD) are exceptionally resilient. After extensive surgeries and hospitalizations, they typically go on to live full, meaningful lives. However, some children with CHD experience developmental and learning differences and benefit from extra help to succeed in school, social relationships, and future employment.1
Why Are Children With CHD at Higher Risk for Developmental Differences?
CHD can result in changes to blood flow to the brain before and after birth, and this might affect brain development. Studies have found that the brains of children with some forms of CHD are less mature at birth. Children who have long hospital stays or other complications (premature birth or genetic/neurologic conditions) are also at risk. Studies are underway to better understand why children with CHD are at risk and how these risks can be decreased.
Does My Child Need Neurodevelopmental Follow-Up?
Children typically do best when developmental delays and learning differences are identified and addressed early; however, it is never too late for evaluation or intervention. For children with complex CHD (those requiring open-heart surgery during infancy) or other risk factors or complications, the American Heart Association and the American Academy of Pediatrics recommend routine neurodevelopmental assessment as an essential part of cardiac care.1 Assessment should also be provided for any child with CHD and developmental concerns. You know your child best; trust your instincts and talk with your doctors and teachers if you think your child is not developing important skills. Ask your cardiac team about a cardiac neurodevelopment program (or a general neurodevelopment program, if a cardiac-specific program is not available), which may be located within the hospital where your child had heart surgery.
What Should I Watch For?
Concerns can arise at different developmental stages. See the Table for milestones and possible concerns. Infancy is a time of rapid growth. In preschool, children build independence and become great learners. School-age/adolescent children are building an academic and social foundation for adulthood. Even children who have had no problems before may begin to struggle as demands increase over time. Ongoing reassessment is needed to identify and support changing needs.
What Can I Expect From a Neurodevelopmental Assessment?
Assessments provide a snapshot of a child’s strengths and weaknesses in comparison with other children the same age. Repeated assessment helps to track change/improvements over time. For infants/toddlers, the assessment consists of play and structured games. For older children, it includes activities that resemble schoolwork. Parents and teachers may be asked to fill out questionnaires about learning and behavior. Recommendations are then made to support child development. For example, in young children, every state has an early intervention program that provides therapies (eg, speech or physical therapy) to help children meet their full potential. In older children/adolescents, therapies and academic supports can be provided in the school and outpatient community.
Your Role as a Parent
Families often say that children with CHD are evidence of miracles. As the family member of a child with CHD, you have already helped your child succeed by providing support, encouragement, and important resources. Regular neurodevelopmental assessment is an important part of care for children with CHD that will help your child continue to thrive.
Sources of Funding
This work was supported by an award from the American Heart Association.
The information contained in this Circulation Cardiology Patient Page is not a substitute for medical advice, and the American Heart Association recommends consultation with your doctor or healthcare professional.
- © 2014 American Heart Association, Inc.
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