CHD, the Brain, and Neurodevelopmental Differences

Kids with CHD who require cardiac surgery in the first year of life are at highest risk.

The heart and the brain develop simultaneously in the first weeks of gestation, long before birth. As a parent of a child with CHD, you know that your child’s heart has defects that affect its structure and function. And sometimes the factor that caused the heart to develop abnormally also caused the brain to develop abnormally. This includes chromosome abnormalities or genetic disorders. It also includes prenatal exposure to substances like drugs, alcohol, and (certain kinds of) prescription medications, or when the mother of the child has (certain kinds of) medical complications during pregnancy. There are likely other causes that we don’t yet understand. Surgical advances are incredible and are now saving more lives than ever!!

Medical teams want to do more than help children with CHD survive. They want them to have a high quality of life.

Neuroscience has taught us that there are patterns in how the brain is different in the child with CHD. These patterns can vary for lots of reasons, such as the child’s type of CHD, whether the child has other medical conditions (e.g., genetic diagnosis), and whether the child experienced medical complications (e.g., cardiac arrest, infections, long hospital stays). Here is a little about what we know:

The brain of the child with CHD can be smaller before birth, and it continues to be smaller into (at least) early childhood. Second, the brain can be injured from abnormal or disrupted blood flow from the heart to the brain. An injury to brain tissue can happen before, during, and after cardiac surgery, especially when lengthy cardiopulmonary bypass is required. We also see from brain imaging that some children have differences in specific structures of the brain. Those structures might be smaller or thinner. Finally, growing neuroscience is now showing that the pathways between the cells of the brain are disorganized or inefficient. Sometimes they are located in new places (actually really amazing)! This is an area of research that is exploding. Scientist are working really hard to find ways to reduce injuries to the brain of the child with CHD, especially during infancy.

Because the brain of the child with CHD is different, children can show developmental challenges. They might show up early on, such as with feeding problems, lots of crying or sleep difficulties, and motor delays during infancy. Preschool children can show early attention problems or slow learning. But in some cases, challenges don’t appear until later. A peak in difficulties can start around 3rd to 4th grade when school gets harder. School related frustrations may grow in middle school, and signs of anxiety or overwhelm can occur. Problems with reading comprehension and math might need to be addressed. Commonly, families notice issues with attention and executive skills, which includes things like forgetfulness, disorganization, problems with multi-step directions, procrastinating or avoiding tasks, and reduced effort. In terms of social functioning, some kids with CHD have difficulty making friends and reading social cues. They can also show slow growth in their functional independence as they get closer to adulthood too.

Children with CHD have some incredible strengths.

These should be targeted for intervention to improve weaknesses! For example, children with CHD tend to be “wise old souls” despite their age. They are strong and resilient. They are creative and imaginative. And they are empathic and loving. From the very beginning, families of children with CHD have been through a lot too! It’s clear that families pass down their own character strengths to their children with CHD.

Every child with CHD is different. Its critical to understand your child’s unique strengths and weaknesses!

This allows you to advocate for your child with teachers, therapists, providers, and other family members. It also allows you to appropriately support specific weaknesses, and to build and nurture areas that are strengths.

If you have questions about the needs of your child with CHD… talk with your medical and school team.

Watch the FREE video about Getting a Neurodevelopmental Evaluation for Your Child with CHD.