Medical care is part of life for many families affected by congenital heart disease. Even when treatments go smoothly or are long in the past, medical experiences can shape how a child’s body and brain respond to stress.

This month’s focus is on how medical experiences affect the nervous system, learning, and behavior—and how parents can support regulation and recovery.

Medical stress can affect behavior, attention, executive functioning, cognitive fatigue, and memory. Some children show changes immediately after procedures or hospital stays, while others may show subtle effects later.

For infants and toddlers:

• Changes in sleep, feeding, big emotions, or clinginess are common after stress. When you separate, show that you are confident they are okay, and keep it loving and short (prolonging goodbyes makes it harder).

• Re-establish predictable routines as soon as possible (bedtime, weekly schedule).

• Prioritize co-regulation (holding, rocking, soothing voice) before expecting independent coping; increase your one-to-one time for play and activities; consider medical play if appropriate (first aid kit for stuffed animals).

For school-age children and teens:

• Let teachers know when medical demands are high so expectations can be adjusted. Plan ahead whenever possible. Can you get work for home to avoid overwhelm upon return?

• Stress can reduce attention, processing speed, memory, and mental stamina. Advocate for a slow transition back to a full schedule if needed. Modify coursework expectations to reduce overload.

• Temporary dips in school performance are common after stress, but excessive absences can really affect a student. Do they need more time with a teacher or tutor to catch up?

• Executive skills can weaken under medical or emotional load. Trouble concentrating, forgetfulness, disorganization, and procrastination would be normal. Ask your older child/teen about how to help... More reminders, a new calendar/schedule, explore new apps, tutor support?

Medical experiences can challenge a sense of safety—even when you feel confident about the quality of care. Your child may show terror even with small, familiar medical procedures (e.g., labwork). You may experience panic even when there are no complications. Medical stress is complex.

For parents and caregivers:

• Your own emotional reactions are not signs of weakness. You are not overreacting. You are not alone.

• Lean on your social network. Take more moments to care for yourself. Can you sleep in an extra 15 minutes? Can you sit in the driveway and listen to one more song? Make room for your emotions - who will listen the way you need?

• Be careful about putting pressure on yourself to fix things for your child. Your calm presence matters more than what you could say. Sometimes there are no words...

For children and teens:

• Your child's sadness or tears are be expected. Anger and irritability may also show up. Give space and permission for these emotions. What outlets can you give them?

• Keep explanations about medical topics honest and simple; repeated questions are often about reassurance.

• Normalize and build confidence. “You can feel brave AND scared at the same time”. "I know you can handle this". "I've already seen you do really hard things and I believe in you".

• Offer choices where possible to restore a sense of control (what to wear, what to eat, when to take breaks).

• Predictability, structure, and routines are important. Slowly return to daily expectations and know that doing what is "typical" will help your child feel capable and competent (even if they do some resisting). Allowing them to avoid things won't help in the long-run.

Notes About the Newsletter: Each month’s newsletter highlights a few themes that commonly come up for families raising children with CHD. As your child grows and circumstances change, different topics may feel more or less relevant over time.

This newsletter is for educational purposes only and does not replace individualized medical or behavioral health care. For urgent concerns, contact your care team.