For Parents: What to Expect

We recommend that you see us at certain stages of your child’s life. Typically, your child with complex congenital heart disease will be scheduled for an evaluation and assessment at ages 3, 5, and 8 years of age, as recommended by the American Heart Association. Additional visits can be scheduled as needed.

You child's visit and evaluation

During this visit, your child will see one to three specialists, including a developmental pediatrician, neuropsychologist, and nurse practitioner. Your child will receive:

• A physical exam.
• A health history review.
• Targeted neuropsychological testing in order to develop a behavioral and developmental profile.

At the end of the evaluation, you will receive:

• Integrated feedback from our care team on our findings.
• A summary of recommendations and resources on supportive services in your community.
• Counseling and guidance on how to best support your child’s development, behavior, and learning.

A complete report, including a summary of neurodevelopmental testing and recommendations for support services and therapies, is sent to you within a few weeks, which you can share with your child’s pediatrician, cardiologist, and school.

Signs and symptoms of neurodevelopmental delays

Because neurodevelopmental delays can often be improved with early treatment, we encourage you to bring in your child with complex congenital heart disease for periodic evaluations even if you do not notice obvious neurodevelopment delays. Common signs and symptoms of delays include but are not limited to:

• Gross motor (physical movement) delays, clumsiness.
• Fine motor (hand/wrist movement) delays, handwriting difficulties.
• Cognitive delays, impaired memory, processing speed delays, and executive functioning deficits.
• Speech disorder and impaired communication skills.
• Hearing loss.
• Visual perception and processing impairment.
• Sleeping difficulties.
• Behavioral problems.
• Difficulties with understanding emotions, impaired social interaction and adjustment.
• Autism.
• Inattention, hyperactivity, impulsivity, attention deficit hyperactivity disorder (ADHD).
• Depression, anxiety, and posttraumatic stress.

Ask your child’s cardiologist about any concerns you may have to ensure that your child will benefit from the best possible outcome by receiving the right care at the right time.