Leo, born 1991A little over 22 years ago, I was born at Hoffman Estates Medical Center only to be rushed over to Lutheran General Hospital. The reason for the transport was because I was born with transposition of the great arteries, pulmonary stenosis, and ventricular septal defect. The doctors would document my condition as double outlet right ventricle. I was not even a day old before I underwent my first procedure: atrial septostomy. This procedure was done to allow oxygenated blood to the right side of my heart.
For two years, I would survive just from the one simple procedure. When I was finally big enough to operate on, I underwent two open heart surgeries that were a little over a month apart. The first was a Rastelli procedure, which was a procedure focused on getting my heart to pump blood to the correct artery. As for the second one, it was to close up any residual ventricular septal defect that the Rastelli procedure did not fill. I wish I could provide more experience from this time, but the only thing I was ever told was that I was extremely sick between the two procedures.
Luckily enough, the second procedure seemed to do the trick and I was fortunate not to have another procedure until I was 6 years old. For that procedure, my pulmonary valve was replaced with a human donor one. This replacement did not last long because less than two years later, I was told by my doctors that I needed another surgery to replace that valve. The human donor replacement had already become too inefficient. So, at the age of 8, I had my fourth open heart surgery. This time, the doctors inserted a pig’s pulmonary valve for me to use, which would last for a little under six years before needing another replacement. The replacement, a cow’s valve, was put in when I was almost 14 and is still used by my heart today.
While all the surgeries were successful, they still came with complications. When I was 10 years old, scar tissue interrupted the electrical pathway of my heart and sent me into ventricular tachycardia. My heart raced for 294 beats a minute for an hour before it was shocked back into a normal rhythm. The doctors would diagnose this runaway heart beat as ventricular tachycardia. A week later, I received my first pacemaker-defibrillator. Since then, I have had the device itself replaced twice as well as the original leads into my heart taken out and exchanged for new ones. The first couple of replacement surgeries happened while I was in high school while the most recent one occurred only a few months ago. Aside from the actual device changes, I have been shocked by the various devices five times, underwent three ablation procedures, and took trips to the emergency room more times than I could count on two hands.
Needless to say, in the first 22 years of my life, I have been through a lot. But through all of these experiences mentioned (and those unmentioned), I was still able to live a normal life. I played goalie in ice hockey for most of my childhood, strummed the bass guitar in a local band during high school, and joined a social fraternity in college. Currently, I am attending my childhood dream school—the University of Notre Dame—and will be graduating as a Psychology and Pre-Health major in May. In the fall, I will be attending Edward Via College of Osteopathic Medicine in South Carolina.
I know what it was like to grow up with a heart condition. I would be lying if I said there were not times where I hated the fact that my heart was different from everyone else’s. There were several occasions where I questioned God’s reasoning for keeping me alive through all these struggles. Then again, to this day, I still cannot fully comprehend the hell my parents had to go through, leaving their child’s fate in another’s hands. Nonetheless, after growing up and seeing the big picture, I could not be happier to have received such a beautiful blessing in disguise. Not only am I getting the chance to pursue a career in medicine (which will hopefully be as a pediatric cardiologist), I have been able to join Little Hearts to swap stories and share my input with anyone that would like support.
Story by Leo, Adult CHD Survivor - Illinois
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Destiny, born 2004