Cardiac Neurodevelopmental Program

Research shows that children with heart conditions are at risk for motor and language delays, learning difficulties, attention problems, and social challenges. The American Heart Association and the American Academy of Pediatrics recommend that children with some heart conditions, such as those needing surgery in the first months of life, be seen in a cardiac neurodevelopmental program. This allows early identification of developmental issues and can aid in securing the appropriate supportive resources.

Children’s is a founding institutional member of the Cardiac Neurodevelopmental Outcome Collaborative, which is an international group of healthcare professionals committed to partnering with families to optimize neurodevelopmental outcomes for congenital heart disease through clinical and research initiatives across the lifespan.

At Children’s, our team of experts can identify and help your child work through any developmental issues. We provide:

  • Comprehensive assessment of developmental skills during critical phases between infancy and age 21
  • Recommendations for support, intervention, community resources and guidance with school planning
  • Consultation for caregivers regarding ways to support development during hospitalizations
  • Education during the prenatal period about neurodevelopmental concerns associated with congenital heart disease

Learn more about ways to support the developmental needs of your child with congenital heart disease

Infants to preschool

You and your child will meet with a pediatric psychologist to assess and monitor progress. Developmental testing will involve toys and pictures to help assess your child’s thinking, communication and motor skills. We will ask you to complete some questionnaires about your child’s development and about any parenting challenges. Based on the results of this evaluation, we will recommend a course of action to support your child’s specific developmental needs. This may include a referral to our Rehabilitation Program, which includes feeding, physical therapy, occupational therapy and speech-language pathology, Babies Can’t Wait, or the Early Intervention Program in your area.

School age to young adults

Your child will meet with a pediatric neuropsychologist to complete written, oral and picture-based tests. The neuropsychologist will review medical and school records, and meet with you to learn about your child’s family and social background. We will also provide forms for your child’s teacher to complete about learning, attention and behavior in the classroom. The results from this assessment will lead to specific recommendations about ways to support your child’s learning and social-emotional progress.

Our multidisciplinary team includes experts in cardiology, social work, neuropsychology and rehabilitation therapy. They work together with you and other specialists as needed to provide complete developmental care from infancy through early adulthood for your child with a heart condition.

Meet the cardiac neurodevelopmental team

Helpful Resources

Kids at Heart, sponsored by the Sibley Heart Center, offers parents, families and caregivers of kids with congenital heart defects a chance to come together and share their experiences.

Learn more about Kids at Heart

The Cardiac Neurodevelopmental Outcome Collaborative works with families to optimize neurodevelopmental outcomes for children with congenital heart disease.

Learn more about The Cardiac Neurodevelopmental Outcome Collaborative