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Journey from Pediatric CHD Patient to Adult Advocate

I Am One of the Miracles

Born with a congenital heart condition, Tim Carmon was one of Connecticut Children’s first patients. More than 27 years later and now in his forties, he is still a patient here—with Connecticut Children’s adult congenital heart disease program. Tim shared his story: 

I stood on the squash court ready for the serve when I heard my coach tell me I needed to sit down. “I’m fine,” I thought to myself as the door opened. I sat down outside the court, and I started to see stars. My complexion was pale, and my lips were a slight blue. It had been almost 10 years since my first two open heart surgeries to correct my Tetralogy condition, and now it seemed like I needed a replacement. Being fully grown and getting ready to head off to college, I was ready to get a long-term fix and put this heart issue behind me. Having just turned 18, Dr. Harris Leopold, my cardiologist at Connecticut Children’s, started to talk to me about moving into a program for adults. At the time, I didn’t realize the unique and growing need of adults living with congenital heart issues, but over the next 25 years I became more aware of the growing population of those that were lucky enough to live in a time when the 1 in 100 born with heart conditions can not only live to adulthood but thrive.

Watch Tim surprise Dr. Heller!

 

I have been a patient of Connecticut Children’s since the day it opened over 27 years ago, first as a child with a significant heart issue and now as an adult with unique heart challenges that most adult cardiologists are not specialized in. I moved back to the Hartford area after graduating college and I started to recognize the importance of having a group that was able to care for my unique needs and was keeping up to date with the challenges people with my condition faced as they go through life. When I joined Dr. Felice Heller’s care at Connecticut Children’s at 18, I viewed the relationship as just another annual doctor visit where someone would listen to my heart and tell me everything was ok. Being at the children’s hospital sometimes got awkward. Not only would the nurses need to search for blood pressure cuffs that fit me, but I started to notice that I was increasingly closer to most patients’ parents’ ages.

Tim as a toddler.

Over the past 25 years, I have come to see my relationship with Dr. Heller and the Connecticut Children’s team as less of an annual touch base, and more of a partnership in helping me live my life and thrive with the least amount of limitations. In these past 25 years, I have been lucky enough to graduate college, get married, have three children, run a 10K without walking, have a successful career and live life aware of my condition but not bound by it. Having a team learning every day how to better coach and treat people like me is a true partnership that has allowed me to live a life that, 40 years ago, would likely have been viewed as a miracle. God has blessed my past 40+ years, but I know the team at Connecticut Children’s has been His hands.

Tim as an adult with his family.

As I look to the next 25 years+, I recognize the journey will come with twists and turns, my condition will present new challenges, and the medical community will make new advances. The gift of an adult congenital heart program in the Hartford area that not only treats people where they are at, but also anticipates the challenges they may face and helps coach and prepare them so they can not only live their life, but thrive in life, is so important to people like me. As the adult congenital heart population ages, having research and quality of care that uniquely focuses on these conditions will improve the care and capabilities to ensure that the 1 in 100 born today can grow and be their own miracle story.

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