Childhood
My health remained relatively stable for many years, despite the challenges I faced. I was diagnosed with allergy asthma at the age of five, and was prescribed a rescue inhaler, which I used as needed. Additionally, I received weekly allergy shots, later adjusted to biweekly and then monthly, targeting allergens like trees, weeds, cockroaches, and cats. Thanks to these ongoing treatments, I was able to play soccer for CUSA Crew with minimal issues. Dr. Dillon often expressed his admiration for my active involvement in sports, even commenting that he sometimes forgot the severity of my heart condition.
At around age six, I had my first experience with a heart rhythm disturbance, known as SVT (Supraventricular Tachycardia). I was diagnosed with WPW (Wolff-Parkinson-White) Syndrome, a condition tied to my Ebstein’s Anomaly. The SVT episodes were typically triggered by fever, and my parents would try various methods to restore my heart’s normal rhythm, like having me blow through a straw, bear down, or dip my face in ice water. While these techniques sometimes worked, other times, after twenty minutes of trying, we had no choice but to head to the emergency room.
Once there, doctors would administer an IV and treat me with Adenosine, a medication used to manage arrhythmias. Sometimes, it took more than one dose, with each successive dose stronger than the last. If that didn’t work, they would resort to cardioversion - a procedure to restore normal rhythm in arrhythmias using electric shocks. I always dreaded going to the emergency room, knowing they would administer the aforementioned Adenosine, which would temporarily stop my heart to reset its rhythm. It felt like I was drifting away from this world, and I feared that it might stop my heart permanently, especially when multiple doses or cardioversion were required.
As my symptoms persisted, we consulted Dr. Dillon, who recommended we see Dr. Timothy Knilans at Cincinnati Children’s Hospital Medical Center. Dr. Knilans was the director of Clinical Cardiac Electrophysiology and a specialist in heart pacing. At age seven, I underwent my first heart surgery. The goal was to correct the issue by burning away extra electrical pathways in my heart, leaving behind a normal pathway. Unfortunately, the procedure didn’t work, and the SVT episodes continued. I was devastated; I remember breaking down in tears, feeling the weight of the situation. All I wanted was to live like any other kid, without these health challenges. Despite my frustration, I tried my best not to dwell on my circumstances and pushed forward as much as I could.
In school, teachers noticed I was struggling. I fell below average in math, reading, and spelling, which led me to work with an Intervention Specialist and participate in an Individualized Education Program (IEP) for additional support. I also saw a speech therapist to help with pronunciation issues. I was still recovering from my first heart surgery and had missed a lot of school, so in second grade I was held back and had to repeat the year. Thankfully, the teachers provided extra time for tests and allowed me to take them in the Intervention Specialist's room for more support. Unfortunately I faced bullying, with others assuming I had 'failed' second grade.
As the years went by, the frequency of my SVT episodes increased, leading to more emergency room visits. Sometimes, the episodes would happen while I was at the pool or at school. When I was at school, I’d go to the clinic, where the nurse would try massaging my carotid artery to help restore my heart rhythm. If that didn’t work, they’d call an ambulance and take me to Dayton Children’s Hospital. When I was at the pool, my dad would rush me to the fire department, where they were familiar with my condition and knew how to help. The unpredictability of the episodes made every day feel uncertain, but I did my best to keep moving forward with my life, even when the situation felt overwhelming.
We kept a journal to identify any patterns or triggers, but nothing seemed to explain the episodes. At age ten, we decided to try the surgery again with Dr. Knilans. This time, he couldn’t reach part of the problematic pathway because it was located on the outer part of my heart. Once again, I felt devastated, desperate for a solution to stop the SVT episodes. Dr. Knilans suggested we wait until I was older to attempt the procedure again, and in the meantime, he recommended a new medication called Flecainide, which had shown promise in treating rhythm disturbances. Fortunately, that medication worked for me, and for the first time in years, I was free from those awful emergency room visits and the dangerous drugs that came with them.
