CHD Minds

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CHD Minds empowers families of children with congenital heart defects through science-backed, bite-sized education in neurodevelopment, therapy, and mental health—bridging research and real-life to support informed, confident caregiving.

11/26/2025

For years, parents have been told, “Your child looks fine; let’s wait and see.”

Two huge 2024 studies used national education and health records to ask a blunt question: How are children with CHD actually doing in school and beyond?
Oxford Academic
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Across hundreds of thousands of students they found that children with CHD:

Were more than twice as likely to be identified with a special educational need

Missed more days of school on average

Were more likely to achieve lower examination grades

Had higher unemployment rates six months after leaving school

Importantly, these differences remained even after accounting for demographics and other medical factors. Absences explained some of the gap—but not all of it.

For families, this validates what many of you live every day:

Your child may work twice as hard for the same grade.

Medical time away from school has real academic and emotional costs.

Support cannot be based only on “they look okay in clinic.”

These studies support early school evaluations, IEPs/504 plans, and ongoing monitoring as standard care, not a “nice extra.”

11/25/2025

Survival for children with CHD is now above 90%, which means more of our kids are reaching school age, adolescence, and adulthood. But a 2024 American Heart Association scientific statement pulled together decades of data and confirmed what so many caregivers have been saying for years:

CHD is not “fixed” after surgery. It is a lifelong neurodevelopmental and mental health condition, too.

The statement highlights that individuals with complex CHD are at increased risk for:

-Cognitive and executive function challenges

-Attention and learning difficulties

-Emotional and behavioral concerns

-Lower academic attainment and greater special education needs

This doesn’t mean every child will struggle. It means the risk is high enough that monitoring and support should be built into routine care, not left up to parents to fight for alone.

For families, this statement is powerful validation: if your child needs extra help at school or in daily life, it’s not because you “did something wrong.” It’s because their brain and nervous system have lived through serious cardiac disease.

Citation:
Sood, E. et al. (2024). Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease. Circulation.

10/20/2025

Executive functioning is what helps us stay organized, manage time, regulate emotions, and adapt when plans change.
For children with congenital heart disease (CHD), these skills can develop differently.

Studies show that brain areas responsible for executive function—especially the prefrontal cortex—are vulnerable to changes in oxygen flow and early surgical stress. As a result, children may appear forgetful, impulsive, or easily frustrated, when in reality, their brains are working overtime to self-regulate.

Understanding these differences changes how we respond. It’s not about discipline—it’s about development. When caregivers and educators support executive function skills through structure, predictability, and gentle coaching, kids thrive.

💬 Have you noticed your child struggle more with organization, transitions, or emotions? What helps them most?

📖 Reference:
Cassidy, A. R., White, M. T., DeMaso, D. R., Newburger, J. W., & Bellinger, D. C. (2015). Executive function in children and adolescents with critical cyanotic congenital heart disease. Journal of the International Neuropsychological Society, 21(1), 34–49. https://doi.org/10.1017/S1355617714001027

10/19/2025

Caregivers are constantly told to “take care of yourself,” but the truth is—most days, you’re running on fumes.
Self-care doesn’t have to mean spa days or time away. It can mean micro-moments of rest that remind your nervous system you’re safe.

☀️ Step outside between appointments.
💧 Drink water before you answer the next email.
💨 Take three deep breaths before you walk back into the room.
🫶 Rest without guilt—your worth isn’t measured by how much you give.

These tiny pauses protect your health, your regulation, and your connection with your child. You can’t pour from an empty cup, but you can refill it drop by drop.

💬 What’s one small thing that helps you recharge during hard days?

📖 Reference:
Jackson, A. C., Frydenberg, E., Liang, R. P. T., Higgins, R. O., & Murphy, B. M. (2015). Familial impact and coping with child heart disease: a systematic review. Pediatric Cardiology, 36(4), 695–712. https://doi.org/10.1007/s00246-015-1121-9

10/18/2025

Talking through routines—mealtime, dressing, or car rides—stimulates brain regions tied to memory, attention, and emotional connection.
Children with CHD may have delayed expressive language or processing speed, so frequent, natural language exposure is key.
Narrate actions (“We’re washing your hands—look at the bubbles!”) and pause to let your child respond, even with gestures or sounds.

💬 What’s your child’s favorite topic to talk about—or make sounds about—lately?

📖 Reference: Wernovsky, G., et al. (2019). Neurodevelopmental outcomes in children with congenital heart disease: speech and language considerations. Cardiology in the Young, 29(8), 981–987. https://doi.org/10.1017/S1047951119001317

10/17/2025

Many children with CHD have reduced stamina and working memory, making multi-step tasks feel overwhelming. Breaking activities into small, achievable chunks reduces frustration and supports independence.
Try visual checklists, one-step directions, and praise for effort—not just completion. These approaches help the brain organize and process information efficiently.

💬 Have you noticed your child do better when you break tasks down or give them one step at a time?

📖 Reference: Brosig, C. L., Mussatto, K. A., Kuhn, E. M., Tweddell, J. S., & Bear, L. (2013). Neurodevelopmental outcomes in preschool survivors of complex congenital heart disease. Journal of Pediatrics, 163(6), 1540–1546.e1. https://doi.org/10.1016/j.jpeds.2013.07.001

10/17/2025

Children with CHD often fatigue faster, but small, consistent bursts of activity are powerful for endurance and coordination.
Short play sessions like crawling races, balance games, or hallway walks build strength and help regulate the nervous system. Movement also supports brain oxygenation and attention—key components of learning and recovery.

💬 What’s your child’s favorite way to move or play right now?

📖 Reference: Longmuir, P. E., & McCrindle, B. W. (2017). Physical activity recommendations for children with congenital heart disease. Canadian Journal of Cardiology, 33(11), 1549–1557. https://doi.org/10.1016/j.cjca.2017.09.017

10/16/2025

Current research in CHD neurodevelopment is focusing on family systems—how caregiver stress, trauma, and coping strategies directly impact children’s long-term development.
High stress during early recovery periods can affect how parents engage in developmental care, which in turn shapes how children grow, learn, and regulate emotions. Many teams are now testing interventions like mindfulness, parent coaching, and peer mentorship to buffer these effects.

💬 If hospitals could offer one kind of parent support program, what would make the biggest difference for you?

📖 Reference: McCusker, C. G., Doherty, N. N., Molloy, B., Rooney, N., Mulholland, C., Sands, A., ... & Casey, F. (2010). A controlled trial of early interventions to promote maternal adjustment and development in infants born with congenital heart disease. Child: Care, Health and Development, 36(1), 110–117. https://doi.org/10.1111/j.1365-2214.2009.01016.x

10/16/2025

Children with congenital heart disease (CHD) are at higher risk for learning challenges, not because they’re less capable, but because their brains have to work harder to process, retain, and apply information.
Neuroimaging studies show subtle differences in white matter and connectivity that affect attention, processing speed, and executive functioning—all critical for learning. Early intervention and school-based supports can help bridge these gaps, especially when teachers understand the why behind the challenges.

💬 What’s one thing you wish your child’s school team understood about CHD-related learning needs?

📖 Reference: Marino, B. S., et al. (2012). Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management. Circulation, 126(9), 1143–1172. https://doi.org/10.1161/CIR.0b013e318265ee8a

07/11/2025

In a 2017 study of school-aged children with CHD, researchers found that math performance was consistently lower than reading skills—even when children had average IQs and no learning disability diagnosis. Why does this happen?

Math relies heavily on working memory, attention, and visual-spatial processing—functions often affected in CHD due to altered brain development from reduced oxygen flow in utero, early surgeries, or long hospital stays. These subtle deficits don’t show up on the surface, so many CHD kids are left to struggle silently, misunderstood as unfocused or underachieving.

Parents may hear things like “he’s just not trying” or “she’s bright, but lazy”—when in fact, the child is working much harder just to keep up. This research helps validate what families often already know: support is needed, not discipline. Classroom accommodations, learning specialists, and neuropsych evaluations can uncover the full picture.

What subject has challenged your child the most in school—and how did you support them?
📖 Bellinger, D. C. et al. (2017). Academic achievement in children with congenital heart disease. Journal of Pediatrics, 181, 83–89.

07/11/2025

Medical trauma in CHD children is often misunderstood or overlooked—especially when the child appears "resilient" or "used to it." But research shows that trauma doesn't always come from one dramatic event. It often results from cumulative stress: repeated IVs, long hospital stays, separation from parents, or having no say in what happens to their body.

A 2021 scoping review in Pediatric Critical Care Medicine found that more than half of pediatric ICU survivors exhibit symptoms of post-traumatic stress, including hypervigilance, avoidance, nightmares, and emotional withdrawal. These children are often labeled as “difficult” or “sensitive” instead of recognized as survivors of repeated medical stress.

This kind of trauma affects more than mood—it can shape learning, memory, emotional regulation, and even how a child tolerates medical care in the future. Trauma-informed parenting and therapy help create felt safety and restore control.

What signs of medical trauma have you noticed in your child?
📖 Nelson, L. P. et al. (2021). Psychological outcomes of pediatric patients after intensive care unit treatment: A scoping review. Pediatric Critical Care Medicine, 22(1), e30–e38.

07/10/2025

Processing speed refers to how quickly the brain can take in and respond to information. A slower processing speed doesn’t mean a child isn’t smart—it just means they need more time.

CHD children often show delays in this area, especially those with histories of open-heart surgery or prolonged hospital stays. This may affect test-taking, classroom participation, or how quickly they respond to social cues.

Simple accommodations—like extra time, slower pacing, or visual supports—can make a major difference.

Has anyone ever assumed your child wasn’t paying attention, when they just needed time?
📖 Bellinger, D. C. et al. (2011). Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: The Boston Circulatory Arrest Trial. Journal of Thoracic and Cardiovascular Surgery, 142(3), 634–641.

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