Addressing Childhood Medical Trauma

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Since the mid-20th century, medical advances have led to a growing number of people living with serious medical conditions from childhood. During this time, survival for babies born with a heart condition has improved by 75 percent. Congenital heart disease (CHD) is the most common birth defect worldwide, affecting nearly 1 percent of babies, with an estimated 12 million people living with CHD globally. CHD is incurable, with lifelong specialist cardiac care recommended, although the Adult Congenital Heart Association (ACHA) estimates that less than 10 percent of adults with CHD are in specialist care.

It is unusual to face a traumatic situation that you’ve already experienced, knowing that you'll face it again. Yet, this is often the case for people living with a serious lifelong health condition, such as CHD. From infancy, children with serious medical conditions may need to keep quiet and still for invasive, often painful, life-saving treatment. Messaging to be brave, a "warrior," and a "good patient" can create a veil of silence that prevents them from voicing distress.

Certainly, positive adaptation to childhood stressors can lead to increased resilience, determination, and appreciation of life. Yet, some also learn to minimize the expression of their hurt to protect the adults entrusted with their care, to fit in with peers and avoid discrimination, or because they don’t want to appear ungrateful. Social support is one of the most important protective factors during traumatic experiences, and being forcefully held for medical procedures or having to endure them in the absence of a caregiver can be simply terrifying. Our bodies respond to threats by going into defense mode as stress hormones trigger our fight-or-flight alarm system. If escape seems impossible, we dissociate by "playing dead" for survival. This may be misinterpreted as coping and reinforced with a bravery sticker. Repeated exposure to childhood medical trauma can negatively impact feelings of psychological safety throughout life.

Lack of support for medical trauma is an issue I have felt my whole life. I was born with a complete heart block and a hole in my heart (atrial septal defect) and fitted with a cardiac pacemaker at 11 days old, a world-first in 1978. My mom first held me when I was 6 weeks old, already fitted with a second pacemaker (the first one failed) and scarred with broken ribs. She did her best to "love me better."

I’ve depended on pioneering medical treatment since, including countless cardiac surgeries, treatments, hospitalizations, and emergency trips to the hospital. By the age of 7, I had been fitted with five pacemakers by thoracotomy (a procedure where the ribs are broken and the pacemaker is fixed to the heart). Early devices were set at a fixed rate, limiting me physically. I was unable to take part in PE lessons, active play, or keep up with my peers.

I had open heart surgery to repair the hole in my heart when I was 13 years old. Around this time, I was fitted with a variable-rate pacemaker, enabling me to be more active. CHD is a lifelong condition, and I was fitted with my eleventh pacemaker a few years ago, spending a month leading up to this surgery in the hospital awaiting a surgical slot with a specialist team.

I am far from alone in my experiences. Approximately 1 in 2 people with CHD will experience anxiety, depression, or post-traumatic stress during their life, two to three times higher than the general population. Despite an improved understanding of the impact of early trauma, access to psychological support remains poor. My career as a psychologist and researcher promoting psychologically informed medicine is motivated by a desire to improve people's understanding of the psychological impact of living with a serious medical condition from childhood. This approach aims to mitigate medical trauma and improve well-being by promoting a holistic, trauma-informed, compassion-focused approach to healthcare.