A Story of Resilience: My (Congenital) Heart (Disease)

My Heart Story

Every life tells a story, and mine begins by being born "blue" with Tetralogy of Fallot, a complex congenital heart defect. As a newborn, I quickly learned how much strength I needed, even to breathe, move and eat. I was born with a mountain to climb for even simple human experiences. 

As I grew up, I learned to to hide my scar, both the physical one on my chest and the emotional one in my heart. I longed to blend in, to be seen as 'normal' and brave, but the truth is that my hidden story was far too powerful to remain silent. Like many others with congenital heart disease, my struggles often went unnoticed by those around me. My shame of being different and the continued experience of braving through painful and scary experiences began to tell themselves through the pages of my diaries.

The weight of pediatric medical trauma shaped my experiences and influenced my relationships, learning and my own belief in myself. The stories of trauma from repeated hospital visits, invasive procedures, and the uncertainty of my health became a silent companion throughout my childhood. I shared with many others (who I had not yet met) many potentially traumatizing experiences including

• being separated from my family
• unfamiliar environments
• hearing doctors talk to parents and not being included
• feeling strange on medications and anaesthetic
• not understanding what was going on
• being in pain

• strange, unfamiliar sounds, sensations and memories

   

Congenital Heart Disease taught me courage and resilience and as I grew into myself and learned the deep wisdom of my own body and heart, I discovered that my own story was my healing.

What does Research Say?

Research has begun to identify numerous impacts of Pediatric Medical Trauma (PMT) on the individual and family system. On my website, I share my research paper citing the growing accumulation of research findings highlighting impacts and sharing hopeful tools and techniques to build resilience. Here are some emerging identified emotional, social and psychological tolls of living with the experiences of chronic conditions and early medical trauma:

• NEUROBIOLOGICAL CHANGES: The stress and trauma of medical experiences can impact the structure and function of the brain and nervous system. Impaired cognitive systems can impede memory, concentration, linguistic capacities and other healthy neurological processes.

   

• POST-TRAUMATIC STRESS RESPONSES: Children with PMTS may experience uncomfortable or painful emotions related to their medical condition or treatment that are difficult to process.  Regulating emotions and responses can become challenging . Three common trauma responses are re-experiencing, hyperarousal and avoidance. 

   

• IMPAIRED REGULATION: Medical trauma can interfere with regulating brain functions which can impair nervous system responses. The dysregulation of the nervous system can become over activated or disconnected.

   

• SOCIAL RELATIONSHIPS AND ATTACHMENTS: Exposure to medical trauma can be a stressor that impacts the entire family's well-being as they cope with the child's medical situation. Attachments and secure bonding can be disrupted impacting social development and relationships.

Finding Anchors of Resilience

Reflecting on my personal journey, I realized just how important it was to understand my own emotional resilience while experiencing the challenges of living with congential heart disease. Throughout my childhood, I found myself alone with these experiences, hiding my struggles to be brave and protecting my family from the true difficulties I carried.

My journey taught me that emotional strength is not just about recovering from difficult situations, managing pain and physically healing, it is also about the story of inner resilience to anchor me in my own body and experiences. I found my own resilience in sharing my story. Resilience was my anchor in moments where I didn't feel stable. It is felt in my mind and body. In writing through my feelings and speaking about my own pain. Somatic body-based counselling and yoga brought me to this point, where I could take a deep breath into my present moment.

Breath work has been a challenging journey for me, especially considering the surgical trauma on my diaphram and the memories both physical and emotional of breathing through an oxygen tube. Developing a trusting relationship with my breath, involved more than just simple techniques like box breathing; it was a complex process that required deep engagement with my body and mind. Over time, I developed a calm and trusting practice and relationship with my breath, transforming it into a source of regulation and inner knowledge.

Through this journey, I learned to understand the expansion of my ribs, calm and regulate myself in moments of fear and to use the simple movement of my breathing to find stability

I have found balance in practicing yoga since my early twenties. This has been a grounding and healing experience, especially since there are times that my body's struggles were a large source of my stress and anxiety. Despite the difficulties posed by my health condition, yoga has provided a sanctuary where I can cultivate balance. Throughout my practice, I have faced mental and physical challenges, particularly when struggling with symptoms of my congenital heart disease, including arrhythmias, edema and weakness. It took time to learn to trust my body and build strength through yoga and somatic body work. My body, heart and limbs have been beautiful teachers helping me understand the feeling of integration, rhythm and balance. The yoga studio became a safe space to explore my limits and celebrate my strength, balance and capacity.

Learning and unlearning protective patterns has been a difficult personal therapeutic journey. I have learned to understand and have compassion for my nervous system and all the work my body has done to hold stories and protect me. Finding the wisdom in my own body and learning to listen in has been something that I was able to do with the support of counsellors. Part of my own resilience is knowing and understanding my body's wisdom and capacity. My body, after all was what walked alongside me through all my medical trauma.

I am grateful to all the counsellors that supported me in this path. I could not have done this alone, I needed their connection.

Understanding the body-mind connection is essential in processing trauma, particularly experiences that occurred during the vulnerable developmental phases of childhood. If you or a loved one are navigating the challenges associated with Congenital Heart Disease (CHD) or any other chronic illness or pain, I encourage you to seek out a specialized therapist who has a deep understanding of the identified impacts of medical trauma alongside a somatic and nervous centered practice.

At my clinic Hands to Heart Therapy, I understand and personally know the profound impact that medical trauma can have on individuals and their loved ones. I dedicate my practice to providing a safe and compassionate space for children, youth and adults to experience therapeutic support. As a trained counsellor specializing in medical trauma and somatic integration, I understand the relationships and patterns between our mind and body or soma. I offer play, rhythm work and integration to my clients and I know from my own journey how important this work is to building resilience.

You are not alone, and together we can navigate a path toward resilience, recovery and wholeness.