Understanding the Emotional Journey of Children with Congenital Heart Disease

The Hidden Struggles of CHD

Me at St. Pauls getting a holter monitor

As a child with congenital heart disease, I felt different from my peers. It wasn’t just my surgical scars or my small stature. It was something deeper inside me.

I vividly remember returning to school after open-heart surgery when I was five. My classmates seemed to understand the math sheet while I struggled. The numbers danced on the page, and I slipped into my imaginary world. In that world, I could escape my panic, uncertainty, and confusion.

Around the same age, I held my grandma's hand while watching other kids race for candy. A strange feeling bubbled in my throat. I didn’t know what it was, but it felt bad. I didn’t want to share this feeling with my grandma or family.

I disliked this version of myself. I often heard that I was “shy.” I even overheard a teacher discussing my withdrawal from friends and my eczema. Like many teens, I rebelled. I became fiery, knowledgeable, and argumentative, especially towards adults who didn’t understand me.

Many teachers didn’t grasp my story.

Children with congenital heart diseases (CHD) often face emotional, social, and behavioral challenges alongside their physical ones. These impacts are not always visible but are very real. Trauma can stem from major surgeries or everyday experiences. A confusing comment from a doctor, another patient’s discomfort, the sounds of medical machines, or sensing the emotions of loved ones can all contribute. CHD infants, children, and their siblings may be more vulnerable than adults due to their early developmental stages.

Progress in Understanding CHD

Since my childhood, significant progress has been made. The emotional experiences of children with CHD, their siblings, and parents are gaining more focus in research and clinical practice. Hospitals, schools, and community services are beginning to recognize that healing extends beyond physical health. Supporting the whole child means addressing unseen emotional struggles and misunderstood behaviors.

We now understand that children with CHD often face cognitive challenges, such as difficulties with working memory and processing speed. These challenges can be layered with trauma responses, which may manifest as withdrawal, emotional outbursts, overwhelming anxiety, distraction, or social disconnection. Each child’s medical trauma is uniquely shaped by their story, perceptions, past medical interventions, family context, and experiences of adversity and resilience. Many professionals are beginning to understand this complexity.

In my experience as a private counselor working closely with schools, I’ve found that learning challenges—especially around spelling, math, and general anxiety about school—often surface in counseling. I help teachers, district staff, and parents understand that behaviors observed in the classroom often have underlying reasons that might not be visible, much like these kids’ scars.

Many children with CHD I’ve worked with have not had their full heart story acknowledged as part of their school experience. While scar pride and physical recovery are celebrated, the emotional aspects remain hidden. This can lead to assumptions in classrooms and counseling sessions that don’t fully capture the child’s reality. Some common misconceptions include the belief that because a child’s medical issues are “fixed,” we can simply move on. Others assume they are always brave and strong or prefer not to discuss their health challenges at school. The truth is, every child’s experience is different. Their emotional needs deserve recognition and understanding alongside their physical health.

The Role of Family and Educators

My parents’ experience was different from what families face today. They lacked a connection to the hospital between my surgeries and emergencies. They were worried and didn’t realize my struggles at school were linked to my heart story. They took pride in my fierceness and overachievement, not understanding how this exertion was connected to complex feelings of working hard to survive.Today. Now, we recognize that pediatric medical trauma affects the entire family. A child’s resilience is closely tied to their family’s wellbeing, mental health, and resources.

How to Support Children with CHD

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

Understand the Link Between CHD and Learning

Research indicates that children with CHD may experience difficulties with working memory and processing speed, making classroom tasks more challenging (Spillman et al., 2023). Some may exhibit hyper-regulated states of overachievement. These patterns can affect learning and self-esteem in complex ways.

Build Bridges of Communication

I have a dear friend who is a mom of a child with a complex disability. When her child was in school, she encountered many people who didn’t know her son’s story. Since he couldn’t verbally share it, she did through a heartfelt email. Throughout my teaching career, I’ve met many parents who have taken on this role. There are times for fierce advocacy, but there are also moments to open a door into our child’s story. If they are older, engage your child in this process. I still cherish a note from a grade 6 student about their medical condition that profoundly changed how I viewed their sometimes disruptive behaviors.

Recognize Signs of Trauma and Stress

Children may relive difficult memories, avoid activities, become overly sensitive, or appear hyper-aroused. These responses can affect behavior, learning, and relationships. Sometimes, children protect their families by hiding their feelings. They may not even realize what is happening as they develop their 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—whether at home, school, or in medical settings. School and private counselors have many resources and suggestions to foster this environment.

Advocate for Individualized Support

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

Support the Whole Family

Parental and sibling wellbeing 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 may manifest as behaviors you don’t understand. They might be grappling with feelings of being different, being misunderstood, or harboring fears they can’t articulate. The role of a parent, advocate, protector, and champion of your child’s overall wellbeing is significant. Remember, you don’t have to walk this path alone.

My story changed thanks to a teacher who had a son with multiple open-heart surgeries. She understood 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, counselor, 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, both virtually and in person in North Vancouver at Hands to Heart Therapy.