Cardiac Neurodevelopmental Program | Frequently Asked Questions (FAQ)

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What kind of developmental problems are most common in children with heart disease?

Children with congenital heart disease are all individuals, and there is great variation in their development. Children with more complex heart disease are more likely to experience significant challenges than children with simpler heart journeys.

Infants and young children with congenital heart disease often struggle with self-regulation. They may be unusually fussy, and have trouble with feeding and sleeping. Infants and toddlers are often delayed in their motor milestones, meaning that they may be late to roll over, sit up, stand, and walk. Toddlers may have delayed language.

In elementary school, children with congenital heart disease are at risk of problems with learning and attention. They may have trouble with reading, writing, and math, and their fine motor skills may be impaired, making writing and drawing difficult. Children often have trouble staying organized, and they may a limited ability to pay attention.

In middle school and high school, children often struggle with more complex math skills, and with expressing complex ideas verbally. Visual-spatial skills are often particularly difficult, so adolescents may have trouble with subjects such as geometry. Older students often have trouble staying organized, planning, and with maintaining attention.

At all ages, children with a history of CHD are more likely to have social adjustment difficulties, a reduced ability to “keep up” with their classmates during physical activities, and trouble completing their work on time.

My child is often very tired and can’t always keep up with his/her peers. Is this typical of children with heart disease?

Parents very often report their child’s problems with fatigue and reduced endurance. Participation in physical education classes and recreational sports may require accommodations that provide clear directions for teachers and coaches. Your child’s cardiologist can determine if your child’s condition requires accommodations.

How is this program different from other developmental programs in the hospital?

The Cardiac Neurodevelopmental Program is specifically designed for children with a history of congenital heart disease, and the clinicians have expertise in assessing and supporting the neurodevelopmental challenges associated with congenital heart disease. Assessments in the program rely on input from a multidisciplinary approach (cardiology, genetics, neurology, psychology, and special education) for assessment, and interpretation of results.

My pediatrician says my child is doing well. Do I still need to come?

Children with CHD are at substantially increased risk for developmental delays, academic difficulties, social adjustment challenges, and behavioral disorders such as feeding and sleeping problems. There is a better chance of improvement if the problems are identified as early as possible. “Wait and see” is not a recommended approach to addressing developmental concerns for children with a history of severe CHD. If you are concerned about any aspect of your child’s development, you should seek a second opinion consultation sooner rather than later.

My child is already receiving early intervention services. Do I still need to come?

The Cardiac Neurodevelopmental Program is not the same as Early Intervention. Early Intervention provides developmental screenings and community based developmental supports for children at risk. The Cardiac Neurodevelopmental Program focuses specifically on the developmental risks associated with having heart disease as a young child. The Cardiac Neurodevelopmental Program provides state of the art neurodevelopmental assessments, parent and school consultation, and short terms treatment for behavioral disorders such as sleeping and feeding problems. The Cardiac Neurodevelopmental Program can provide a more thorough and specialized assessment, and can follow your child’s development over time.

My child has an IEP and is receiving services, but we aren’t seeing progress. Can you help?

Yes. Many of the families we work with come to our program just for this reason. We are often asked to review IEP’s and recommend changes, if needed. We typically serve as a second opinion throughout the process of writing or revising an IEP. If needed, we are available to conduct an independent educational evaluation, and we can interpret prior evaluation results.

My child has a history of heart disease but I’m worried he/she may also have autism. Can you help evaluate him/her to see if he/she has an autism disorder?

Rates of autism appear to be increased among children with congenital heart disease. Evaluation of children with CHD for whom there is a question of autism is a specialty of our program staff. Our work includes helping families and school develop appropriate treatment plans and educational programs for children who have both CHD and autism.

My child has feeding and/or sleep difficulties. S/he often refuses to eat, and rarely sleeps through the night. Can you help?

Yes. Feeding and sleeping difficulties are the most common behavioral problems in children with CHD. We evaluate and treat both feeding and sleeping disorders. We can work directly with you to treat these difficulties, or serve as a consultant to your community-based providers.

My child is very anxious. He/she is worried all the time and bites his/her nails. Will your program be of help?

Anxiety is a common problem among children who have experience life-threatening illnesses, and parents often experience anxiety when a child has been ill. Our psychologists assess anxiety in all our patients. We offer short-term treatment for child and family anxiety, and/or referral for ongoing treatment, if needed.

My child’s teacher says that he/she is disorganized and can’t keep track of his/her work. How common is this of children with heart disease?

Organizational problems are a hallmark for children with CHD. They are usually part of a broader profile of learning problems. Evaluation of organizational difficulties is a critical component of neurodevelopmental assessments for children with CHD, and we can help families develop plans to treat challenges with executive functioning.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000 | 800-355-7944

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