Cardiac Neurodevelopmental Program

What does the Children’s Cardiac Neurodevelopmental Program offer?

Children with heart defects and conditions are more likely to have developmental delays and problems with attention and learning. At the Children’s Healthcare of Atlanta Heart Center Cardiac Neurodevelopmental Program, our team of experts can identify and help your child work through any developmental issues.

Inpatient support and services

In the Children’s Heart Center Cardiac Neurodevelopmental Program, we provide:

• Support at fetal diagnosis.
• Patient and family support during hospitalization for surgeries and medical care.
  • Assistance to improve health behaviors (e.g., sleep, diet, physical activity).
  • Treatment for problems that occur alongside medical conditions (e.g., stress, anxiety, depression, pain).
  • Support as families adjust to new medical conditions.
  • Support as families follow treatment plans and medication regimens.
  • Brief treatment for general mental health concerns (e.g., attention deficit hyperactivity disorder, oppositional defiant disorder, mood and anxiety disorders).
  • Brief neurocognitive screening following cardiac arrest or neurological event to facilitate transition back to school.
• Discharge support for planning services and resources once you leave the hospital.
• Integrated care with collaboration between psychologist, medical team, family support team and school program (e.g., educational advocate).
• Implementation of neuroprotective care.
• We help to create a healing environment that promotes neurodevelopment in all aspects of care.
• We implement integrated trauma-informed, evidence-based practice with an emphasis on appropriately managing pain and stress.
• We provide family-centered, team-oriented and individually tailored care to patients.

Outpatient support and services

Research shows that children with heart conditions are at risk for motor and language delays, learning difficulties, attention problems and social challenges. We provide:

• Comprehensive assessment of developmental skills during critical phases between birth and age 21.
• Guidance and recommendations for support, intervention, community resources and school planning.

Note: Outpatient providers at Children’s are contracted under medical benefits of most major insurance plans, and most services your child receives will be in-network. If the services are not covered or if they will not be in-network, you will be notified prior to the start of your child’s visit.

The American Heart Association (AHA) and the American Academy of Pediatrics (AAP) recommend that children with some heart conditions, such as children requiring surgery in the first months of life, be seen in a cardiac neurodevelopmental program. This allows for early identification of developmental issues and can aid in securing appropriate supportive resources.

Children’s is a founding institutional member of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), an international group of healthcare professionals committed to partnering with families to improve neurodevelopmental outcomes for congenital heart defects through clinical and research initiatives across the life span.

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

Infants to preschool-age children

You and your young 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 programs, which can include feeding, physical therapy, occupational therapy and speech-language pathology; Babies Can’t Wait; or the early intervention program in your area.

School-age children 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.

What is a neuropsychologist?

A neuropsychologist is a psychologist with extra training to understand how the brain controls thoughts, actions and feelings. The neuropsychologist works with doctors and teachers to better understand your child’s experiences and get your child the help he needs. A neuropsychologist will help recognize your child’s strengths and weaknesses and help him improve at home and at school.

What can I expect during my child’s visit?

Your child’s visit will take place in the neuropsychology department, where a psychologist will interact and play with your child using toys, pictures and other objects. Our team will work with you to make sure that your child is comfortable during the evaluation. The appointment will last one to two hours for infants and toddlers. Appointments for school-age children and young adults can last up to five hours. At the end of the evaluation, our team will review the results with you and make a plan to help your child at home and in the community.

Should we participate in the program if neither I nor my pediatrician has concerns about my child’s development?

Yes. Children with congenital heart disease are at increased risk for neurodevelopmental concerns, which can include academic, social, emotional and behavioral problems. Infants and toddlers can also have difficulty meeting developmental milestones. Some of these problems are subtle and only become apparent with close monitoring over time. There is a better chance of improvement if the problems are identified as early as possible. Our program provides routine formal neurodevelopmental assessments to help identify potential problems and to offer timely interventions to promote best outcomes.

Should we participate in the program if my child is already enrolled in early intervention, receives outpatient rehabilitation services or has an individualized education program (IEP) at school?

Yes. Our program focuses specifically on the neurodevelopmental risks associated with having a congenital heart disease. Therefore, we can provide more thorough and specialized assessments and feedback. Even when a child is already receiving interventions, we often find that he or she has additional needs or could benefit from increased therapies, medical services or educational supports. Our program will follow your child’s development over time to help make sure that all needs are being met.

We recommend scheduling the first appointment when your child is between 6 and 9 months of age. At that time, a pediatric psychologist will conduct developmental testing to help assess your child’s early thinking, communication and motor skills. Reassessment should occur when your child is a toddler, between 18 and 24 months of age. Starting in preschool, we recommend that your child meet with our neuropsychologist to complete written, oral and picture-based tests. Information is also gathered from parents and teachers. Follow-up visits during the school-age years are recommended based on your child’s progress.

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

Psychology

• Nneka Morris Alexander, PhD

Neuropsychology

• Dawn L. Ilardi, PhD, ABPP/CN
• Elyssa Gerst, PhD

Cardiology

• James A. Nelson, MD