As parents of children with congenital heart disease (CHD), you become experts at watching your child closely — their breathing, their color, their energy, their growth. That same careful observation can be incredibly helpful when it comes to your child’s emotional world, especially anxiety.

The relationship between genetic disorders and neurodevelopmental differences is complex. Some genetic syndromes are commonly associated with congenital heart defects, and it is not uncommon for children with CHD who also have a genetic condition to show differences in development, learning, or behavior.

When a child has congenital heart disease (CHD), families enter a medical world that most never expect to navigate: intensive care units, surgeries, monitors, alarms, and life-altering decisions. While these experiences are often lifesaving, they can also be psychologically overwhelming. One important concept that helps make sense of this is medical trauma.

To many families (and sometimes professionals), it’s not immediately obvious that congenital heart disease (CHD) is associated with developmental differences. This is because the link between the heart and the brain is not obvious. Furthermore, most children with CHD don’t get brain imaging because the medical team is more focused on heart health. But we know a lot about the brain of the child with CHD from research.