Neurodevelopmental Issues (CHD)

The American Heart Association recently published a statement indicating that children with more severe congenital heart defects are at higher risk for neurodevelopmental issues. In simple terms, this means that children with some forms of CHD (usually those that require surgery and regular follow-ups) will not meet developmental milestones at the same time or perform at the same level academically as their healthy peers. (The CDC has information about normal developmental milestones.) These children may also have behavioral issues such as attention deficit disorder (ADD) more often than other children their age.

Parents and caregivers of these children should be aware of potential neurodevelopmental issues so that their child can get early treatment for any problems that may arise. Addressing these issues early will help your child feel more confident and give him or her a better chance for developing life skills and attaining educational success. Not all children with CHD will have neurodevelopmental issues, and those who do often adjust very well and do not appear any different from their peers. Still, it is important to get screenings to avoid any learning problems your child may have.

What is a neurodevelopmental issue?

There are two types of neurodevelopmental issues:

  • Developmental disability: A limitation or disability of the cognitive function of the brain or the way the brain handles emotion, behavior and learning. It may also be a physical limitation.
  • Developmental delay: Developmental, physical and/or mental skills that are not at the same level as other children of the same age.

In addition to social and psychological issues, children with complex CHD have a significantly higher risk of disability in the following areas:

  • Intelligence
  • Academic achievement
  • Language (development, expressive and receptive)
  • Visual construction and perception
  • Attention
  • Executive functioning
  • Fine and gross motor skills
  • Psychosocial maladjustment (internalizing and externalizing problems)

Children with more mild forms of CHD, such as atrial septal defects (ASDs), do not seem to have a higher incidence of developmental disabilities than their peers. Children who were on cardiopulmonary bypass during surgery or children who were born cyanotic (decreased blood oxygen) seem to be at the highest risk. Some types of CHD that increase the risk of neurodevelopmental issues include:

  • Coarctation of the Aorta (Coarc)
  • Tetralogy of Fallot (TOF)
  • Ventricular septal defect (VSD) with comorbidities
  • Total anomalous pulmonary venous return (TAPVR)
  • Single ventricle defects
    • Hypoplastic left heart syndrome (HLHS)
    • Hypoplastic right heart syndrome (HRHS)
    • Tricuspid atresia
    • Double outlet right ventricle (DORV)
    • Double outlet left ventricle (DOLV)
  • Transposition of the great arteries (TGA)
  • Truncus arteriosus
  • Interrupted aortic arch
  • Children with syndromes associated with CHD
    • Down Syndrome
    • 22q 11 Deletion
    • Noonan Syndrome
    • Williams Syndrome

How do I find out if my child has a neurodevelopmental issue?

If you notice problems with your child’s development at any point, contact their primary care doctor or cardiologist right away. Early detection and treatment of issues is important. All children in the high-risk category should be screened for developmental disabilities at 6 to 9 months, 18 to 24 months, 33-39 months, 4 to 5 years, at school age and during adolescence. Your child’s primary care doctor or pediatrician may be able to conduct this screening during a normal wellness visit. Neurodevelopmental specialists are also able to perform these screenings and some children’s hospitals have specialized clinics for screening and treating neurodevelopmental issues in children with CHD. The Development and Education form in the Mended Little HeartGuide can help you keep track of your child’s progress and screenings.

What resources can help me get the best care for my child?

Most cities, counties and states have resources to help children with developmental delays and disabilities. Before you even leave the hospital, your hospital’s social worker may be able to recommend resources such as physical therapy, occupational therapy and early intervention services if needed. Record these on the Development and Education form. If you are connected with a local support group, other parents and caregivers in that group can also guide you to resources and programs in your area.

Many school systems have a process to help detect delays and disabilities in school-aged children. If you have concerns about your child’s academic performance, ask for a meeting to discuss any problems you are seeing. Your state’s Department of Education website will help you find educational resources and provide you with information that can help guide you through the process of handling any special educational needs your child may have. There are also probably educational consultants in your area who can work with your child and help you coordinate the services that he or she needs.

Finally, there are helpful resources for parents with disabilities at the Center for Parent Information and Resources website and on the Special Education Advisor website.

Don’t be discouraged.

Parents and caregivers often find it hard to come to terms with the fact that their child may have neurodevelopmental issues, but please don’t feel discouraged. Most children with CHD — even those with the most severe forms — appear no different than other kids their age. They are usually happy, well-adjusted children. Being aware of the risk of neurodevelopmental issues will help your child get the services he or she needs to have the highest chance of success.

Neurodevelopmental Outcomes in Congenital Heart Disease, Caitlin K. Rollins, Jane Newburger,
Supporting Development in Children with Congenital Heart Disease, Brosig, et. al Circulation. 2014; 130: e175-e176
Developmental Milestones, Centers for Disease and Prevention,
Center for Parent Information and Resources,

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