Cardiac Neurodevelopmental Program

Advances in medicine are helping more children with complex congenital heart conditions survive. These children are at a higher risk for delays during early childhood and problems with thinking, learning or behavior throughout their childhood and teenage years, due to interruptions in brain development. Early assessment and services can help address and prevent problems now or in the future.

CHOC’s Cardiac Neurodevelopmental Program offers comprehensive evaluations and long-term monitoring, which is highly recommended by the American Heart Association and the American Academy of Pediatrics. These evaluations can help you understand your child’s strengths and weaknesses, ensure your child has all the support they need and track their progress from infancy until adulthood.

Who needs a cardiac neurodevelopmental evaluation?

Our Cardiac Neurodevelopmental Program addresses current concerns and helps monitor for future problems. If you are concerned about your child’s development, thinking, learning or behavior, please discuss your concerns with your cardiologist. Concerns you may have noticed include:

• Difficulty expressing themselves or understanding others
• Delays in learning to write or draw
• Problems focusing or remembering things
• Trouble with planning or organization
• Learning at a slower rate than their peers
• Falling behind at reading, writing and math
• Issues with mood or behavior
• Concerns with making friends or social skills

We recommend evaluation and monitoring for all high-risk children, including those that experienced open heart surgery as a newborn or have had additional related complications, such as history of prematurity/low birth weight, genetic disorders, cardiac arrest survivorship, mechanical support (ECMO), heart transplant or evidence of seizures or strokes. If you and your cardiologist agree that an evaluation would be helpful, your cardiologist can place a referral.

Where do cardiac neurodevelopmental evaluations take place?

During early childhood, cardiac neurodevelopmental evaluations take place at the CHOC High-Risk Infant Follow-Up Clinic with a team of developmental specialists. During school age, they take place at the Cardiac Neurodevelopmental Clinic in the CHOC Neuropsychology Program with an expert neuropsychologist.

Evaluations are scheduled for a full day in order to listen to all of your concerns and get a comprehensive look at your child’s thinking and learning skills. An evaluation feels like a day at school, including paper and pencil activities, answering questions and solving problems. Parents/caregivers are also asked to complete forms about the child’s functioning in the waiting room.

After our neuropsychologists complete an evaluation, they meet with your family to discuss the results and share recommendations to support your child’s development. A custom report is also provided that can be shared with your child’s medical team and school to ensure they receive the support they need at school and home.