The School Experiences of Children with Congenital Heart Disease

As a child with congenital heart disease, I had big feelings about how different I was from others at school—not just because of my surgical scars and very tiny body, but something inside me.

I remember so clearly an experience when I was 5 and back to school from open-heart surgery, where all the other children in the classroom seemed to know what they were doing on a math sheet, except me. It didn’t make sense to me. The numbers wobbled all over the page and I could feel myself going into my imaginary world. 

In my imaginary world,  I didn’t feel my panic, uncertainty and confusion.

At around the same age, I remember holding my grandma’s hand  watching all the other kids run in foot races for candy with a big unknown feeling in my throat. I didn’t know what it was, but it felt bad and I didn’t want to share it with my grandma or family.  

I didn’t like this version of myself. I commonly heard how “shy” I was and even overheard a teacher’s conversation with another teacher about my withdrawal from friends and my itching of my eczema. Like many teens, I rebelled by being fiery, knowledgeable and argumentative to any adult, particularly teachers who I felt didn’t get me at all. 

And, many of the teachers didn’t get me because they didn’t know my story. 

Children with congenital heart diseases (CHD) like me often experience emotional, social and behavioural challenges alongside the physical ones. These impacts are not always visible or obvious, but they are real. Trauma can come not only from major surgeries but also from everyday experiences—a confusing comment from a doctor, another patient’s discomfort or situation, the sound of medical machines, or sensing the emotions in loved ones. To add to this, CHD infants, children and potentially their siblings, can be more vulnerable than adults, because of their neurological, physical and emotional growth in early development. 

Since my own childhood, tremendous progress has been made. The emotional experiences of children with CHD, their siblings, and parents are recently gaining more focus  in research and clinical practice. Hospitals, schools, and community services are beginning to recognize that healing goes far beyond physical health and supporting the whole child means confronting the unseen emotional struggles and misunderstood behaviours. We now understand that children with CHD often face cognitive challenges, such as difficulties with working memory and processing speed. Layered on top of this are trauma responses that can show up as withdrawal, emotional outbursts, overwhelming anxiety, distraction, or social disconnection. Importantly, medical trauma is uniquely shaped by each child’s story, perceptions, past medical interventions, family context, and experiences of adversity and resilience. Understanding the complexity is a step that is being made by many professionals. 

In my experience as a private counselor and working closely with schools, I’ve found that learning challenges—especially around spelling, math, and general anxiety about school—often surface in counselling. What I’ve helped teachers, district staff, and parents understand is that behaviors we see in the classroom often have underlying reasons that might not be as visible as these kid’s scars.

Many children with CHD I’ve worked with have not yet had their full heart story acknowledged as part of their school experience. Scar pride and celebrating their physical recoveries is beautifully acknowledged, but the emotional parts are more hidden. This can lead to assumptions in both classrooms and counselling sessions that don’t fully capture the child’s reality. Some common assumptions I’ve noticed are that because a child’s medical issues are “fixed,” we can simply move on; or that they are always brave and strong; or that they prefer not to talk about their health challenges at school. The truth is, every child’s experience is different, and their emotional needs deserve recognition and understanding alongside their physical health. 

My parents' experience was different in so many ways to families now. They didn’t have a connection to the hospital in between my surgeries and emergencies. They were worried and didn’t realize that my struggles at school were connected to my heart story. They were proud of my fierceness and over achievement and didn’t understand how this exertion was connected to complex feelings of working hard to survive.Today, we understand that pediatric medical trauma affects the whole family, and a child’s resilience is closely linked to their family’s well-being, mental health, and resources.

What can families, counsellors, and educators do to better support children with CHD?

Moving forward together:

• Understand and share with others  the link between CHD and learning: Research indicates children with CHD may experience difficulties with working memory and processing speed, making classroom tasks more challenging (Spillman et al., 2023). Some may show hyper-regulated states of over achievement. These patterns affect learning and self-esteem in complex ways.

• Make bridges when they are not there: I have a dear friend who is a mom of someone with a complex disability. When her child was in school, she faced many people who didn’t know her son’s story. He couldn’t verbally tell it himself, so she did through a beautiful email. Over my teaching career, I have met many parents who have taken this role. There is a time for fierce advocacy, but there is also a time for us to open a door into our child’s story or, if they are older, to engage your child in this process. I still have a note from a grade 6 student about their medical condition that truly changed how I felt about his sometimes disruptive behaviours. 

• Recognize signs of trauma and stress: Children may relive difficult memories, avoid activities, become overly sensitive, or seem hyper-aroused. These responses affect behavior, learning, and relationships. Sometimes children protect their families by hiding their feelings and sometimes they don’t realize what is going on as they develop their own emotional intelligence. Regular, gentle check-ins through play or calm conversations can open the door to sharing.

   

• Create safe, supportive environments: Emotional and nervous system regulation is essential. This means acknowledging the child’s experiences and helping them feel safe (and know what it feels like to be safe), whether at home, school, or in medical settings. School and private counsellors have many resources and suggestions. 

   

• Advocate for individualized support: Collaboration and connection between families, medical teams, and educators is vital to tailoring support that meets both physical and emotional needs. Whether your child has an IEP or not, their emotional health matters just as much as physical health and should be included in educational planning or communication with teachers.

   

• Support the whole family: Parental and sibling well-being strongly influences a child’s mental wellness, resilience and self-concept. If you feel overwhelmed or isolated, reaching out for support—whether through organizations like Kelty Mental Health or local groups—can make a difference.

   

For children with CHD, their scars are only one part of the story. Their  emotional journeys might show up as behaviours you don’t understand. Know that there might be struggles they are holding onto whether it is feeling different, being misunderstood or having fears that they don’t even know how to share with themselves, let alone you. The role of a parent, advocate, protector, and champion of your child’s whole wellbeing is a lot. This is a caring reminder that you don’t have to walk this path alone. 

My story changed with a teacher who also had a son who had multiple open-heart surgeries. She knew without needing to ask and encouraged me to write about my experience. She saw my heart. I still write.

National Child Traumatic Stress Network. (n.d.). Effects of medical trauma. Retrieved June 4, 2025, from https://www.nctsn.org/what-is-child-trauma/trauma-types/medical-trauma/effects

Pediatric & Congenital Heart Talks. (n.d.). Improving outcomes for infants with congenital heart disease [Video]. YouTube. https://www.youtube.com/watch?v=Zr8Z47qV44Q

Spillmann, R., Polentarutti, S., Ehrler, M. et al. Congenital heart disease in school-aged children: Cognition, education, and participation in leisure activities. Pediatr Res 94, 1523–1529 (2023). https://doi.org/10.1038/s41390-021-01853-4

About Meghan Stewart

Meghan is a mama of four, educator, counsellor and cold plunger. She was born with tetralogy of fallot and knows that this experience gifted her a unique attunement and sensitivity to herself and others. She is now in private practice working with families and individuals all over BC virtually and in person in North Vancouver at Hands to Heart Therapy.