Heart Conditions and the Impact on Brain Development

Heart defects can affect a child’s neurodevelopment, which impacts how a brain forms the connections that directs behavior and experiences. The neurodevelopment process starts before birth and continues throughout childhood. While some children with congenital or acquired heart conditions don’t experience any significant neurodevelopmental problems, others may have difficulty learning to walk and talk or will have learning and/or behavioral challenges in later childhood.

We spoke with Becky Gregory, PhD (c), RN, CNOR, nursing program coordinator (pictured left), and Paul Glasier, PhD, ABPP, board certified clinical neuropsychologist (pictured right), both with Developmental and Behavioral Sciences, about the Cardiac Neurodevelopmental (CND) Program at Children’s Mercy and what parents need to know.

What is the CND program?

Becky: The CND program cares for children with acquired or congenital cardiac conditions and provides support to families to help improve long-term outcomes. We follow children from birth through adulthood. We identify and/or treat a variety of conditions, which include gross and fine motors differences, speech delays and differences, school concerns, behavioral concerns, and neurological conditions. When needed or appropriate, program providers make recommendations for therapies or learning accommodations. Certain members of our team are available to provide advocacy for the child within their school and community. The CND team is made up of cardiologists, nurses, neurologists, nurse practitioners, psychologists, occupational and physical therapists, speech and language pathologists, and social workers.

How do heart conditions impact child development?

Becky: When a child has a complex cardiac condition, whether as a fetus or postnatally, the brain may not be fully oxygenated and get all the nutrients it needs to support proper development.

Changes in brain development may go undetected until the child is older and starts having problems with cognitive skills such as executive functions (e.g., planning, organization, problem-solving, cognitive/behavioral flexibility) as well as academic, social, and independent living skills that require more sophistication.

Frequently, we see struggles arise in school-aged children, though deficits are often evident in early childhood for children with high-risk cardiac defects. Cardiac defects impact brain development in ways we’re not fully able to understand yet, but we often see developmental differences as children age.

Paul: Children with cardiac defects are living longer because of advancements in medical technology. We’re now seeing different concerns for some children that are medically healthy and thriving that we may not have noticed without the increased life span. Additionally, some of the current research is focused on the role of surgical interventions (e.g., cardiopulmonary bypass) in the cognitive outcomes of children with complex cardiac conditions.

What challenges do school-aged children face?

Paul: It can be difficult for some people to understand the cognitive and emotional challenges faced by children with complex cardiac conditions. Injuries to the body can be easy to detect – you can see if an individual relies on crutches or a wheelchair for mobility. However, conditions impacting brain development are sometimes not identifiable in physical appearance.

It can be difficult for teachers to reconcile what happened in the child’s brain development, so we help communicate what can be done to help the child be their best at school. Some children need extended time to complete academic testing, while others need help with organizational skills or more extensive changes to their educational programming.

Cognitive interventions can also benefit emotional adjustment. A child with a cardiac defect may be well-behaved in school and doing well with friends, but academics may be a big stressor. Due to the cognitive difficulties associated with their medical conditions, children may not be performing as well as others despite trying hard. Children can get frustrated when they can’t see the benefits of their efforts, so environmental supports for cognitive difficulties can enhance their emotional well-being.

Becky: It’s this snowball effect of frustration that may lead to behavior changes in the home or school-setting and can become a bigger problem than just needing more time for school assignments. I think one of the best things we do as a program is recognize issues and become advocates for these children.

The first thing we do before any child has an evaluation is an intake. We ask families what they’re seeing in the classroom and home settings. Sometimes parents tell us they don’t know what’s wrong, but something is just “not clicking.” We help identify what’s going on and provide recommendations for teachers. Designated providers in the CND program will follow-up with families a couple of months later to see if the recommended changes have been incorporated in the classroom and how those are working.

There are tools the parents can also use at home, which can include “chunking” chores into smaller tasks. Instead of telling a child to “clean your room,” give the child directions one step at a time. Providing resources and support is one of the best things our team can provide families. We help parents and caregivers embrace their “new normal” so their child can be successful. Our team helps families have more tools in their toolboxes for their child’s success.

How do you support the entire family?

Becky: We provide a lot of education. Although highly dependent on the severity of the cardiac defects, children with a cardiac condition fall in the normal range of development, but often on the lower-end. A child may need a little extra help or extra time to complete tasks. Sometimes parents get frustrated or stressed because it didn’t take siblings as long to learn or do things. Helping parents understand their child relieves the stress level and gives families a way to handle the issues that come up.

Paul: Parents of children with complex cardiac conditions appreciate information to help maximize their child’s functioning in multiple settings. They often feel validated and connected to a support system. Essentially, it’s really about improving the quality of life for the child as well as the family.

How often should a child be seen?

Becky: It depends on the age. For infants, we try and get a baseline around 6-9 months of age. If the child has a high-risk condition, we typically like to see the child every six months until 3-4 years of age. We’ll see school-aged children every couple of years or as needed.

Paul: Transitional periods are a good time to conduct our evaluations because that's when a child is facing new challenges and increased demands on independent functioning. These include transitions from elementary school to middle school, middle school to high school, at graduation from high school, and transition from high school to college or a full-time job.

How do parents know when they should reach out and ask for help?

Becky: The CND program is self-referral, which means parents don’t need to be referred by a doctor. A lot of older children would benefit from our program or an evaluation if needs aren’t being met by an individualized education plan. We can help with accommodations in the classroom that address a child’s learning challenges.

We encourage parents and caregivers to reach out for a number of concerns. Some of the parent/caregiver concerns we have addressed include: their infant/toddler is not meeting developmental milestones, their child has speech delays or articulation issues, their child is struggling in school, their grades are lower than they should be, attention issues are happening, it takes a long time to do homework or the child avoids homework, poor handwriting skills, difficulty with math and reading, poor memory, having to repeat things over-and-over for a child to remember anything, different learning levels for same-aged peers, and, concerns for their child being anxious, socially awkward, or isolated.

Having a child with a heart condition can be difficult. Each family works in its own unique way and we have to find what works for them.

Learn more about the Cardiac Neurodevelopmental Program at Children’s Mercy.