Growing With CHD
Dawn Ilardi, Ph.D., ABPP-CN, is pediatric neuropsychologist specializing in congenital heart disease (CHD) and a recognized leader in cardiac neurodevelopment. For more than 16 years, she led the Cardiac Neurodevelopmental Program at Children’s Healthcare of Atlanta, providing specialized care for children with CHD. She holds an appointment at Emory University School of Medicine.
A series on development, behavior, and guiding your child’s path into adulthood
- What Your Child’s Behavior Is Really Telling You
Over recent decades, research has expanded our understanding of congenital heart disease (CHD) beyond the heart. We know that CHD can also be associated with differences in brain and nervous system development, shaped by genetics, prenatal, and medical experiences.
For parents, this adds an important layer to an already complex role. You are not only managing medical care—you are also learning to monitor, interpret, and respond to your child’s neurodevelopmental needs. And it can be overwhelming at times.
When a child with CHD melts down, shuts down, or resists, it’s easy to see the behavior as problematic. But behavior is not random—it’s communication. Your child’s brain and body are sending signals about what they need.
For children with CHD, those signals can be more complex due to differences in how their brain develops and functions over time. This can result in a pattern of uneven skills—strengths in some areas and challenges in others—particularly in attention, executive functioning, learning, and emotional regulation.
What does this look like in everyday life? A child may be bright and capable but struggle to keep up, become easily overwhelmed, or avoid tasks that “feel” too demanding. These are not motivation problems. They reflect differences in how the brain processes information—such as slower processing speed or weaker working memory.
At the same time, many children with CHD have a heightened or disrupted awareness of their physical body. Medical experiences can shape the nervous system, influencing how a child interprets sensations like heart rate, breathing, or discomfort. When the body feels overwhelmed or uncertain, behavior may reflect a “survival response”—fight, flight, or freeze—rather than a choice.
This is where a shift in perspective matters.
Instead of asking, “How do I stop this behavior?” try asking, “What is getting in my child’s way right now?”
Is the demand too high for their abilities?
Is the environment a trigger for overwhelm?
Is their body signaling stress, fatigue, or anxiety?
When we understand behavior through both a neurodevelopmental and biological lens, we move from reacting to supporting. Your child’s behavior is not the problem—it’s the clue.
by Dawn Ilardi, PhD, ABPP-CN
Pediatric Neuropsychologist
Founder of Parenting Kids with CHD
