How Research Helped Save My Life

By: Billy Lyman

The Children’s Heart Foundation is a 501 (c)(3) organization on whose board I serve and whose goal is to bring health, hope, and happiness to children impacted by congenital heart defects (CHDs), the #1 birth defect in the United States. We accomplish this goal by funding the most promising research to advance the diagnosis, treatment, and prevention of CHDs, including funding more than $11.1 million in research since The Children’s Heart Foundation’s inception.

Nearly one out of every 100 births, or 40,000 babies each year, will be born with a congenital heart defect. More than half of all children born with CHD will require at least one invasive surgery during their lifetime. Sadly, 20 percent of these children will not live to celebrate their first birthday. 

Although my board service certainly commits me to the mission of the CHF, I am also committed for another reason very close to my heart -- I myself was one of those children born with a CHD.

I was born with a CHD called moderate-to-severe pulmonary stenosis, which in layman’s terms, basically means I have a narrowed and weak valve in the side of my heart where the blood comes back from the rest of my body and is sent to the lungs. I also was born with conditions called situs inversus and dextrocardia, which means that not only is my heart on the right side of my body, but all of the other organs in my body are also flipped (liver is on the left side, stomach is on the right side, etc. etc.).

In order to take pressure off of my weak valve, I had to undergo two open-heart surgeries, one when I was 11 months old and one when I was 11 years old. While the first surgery was a fairly common procedure, the second procedure, was much less common. In fact, I was part of a research study testing the viability of a well-known procedure in CHD treatment, the Bi-directional Glenn Shunt procedure, on patients in which it had never been tried—patients with their organs and heart reversed. When I had my surgery in 1998, I was only the fourth person in the world to have this experimental procedure as part of this study. Thankfully for me and for the many CHD patients like me all over the world who have now had it performed on them, the procedure and the study ended up being a huge success, and, while I will never be rid of my CHD, I am able to live an otherwise healthy life today because of it.

Now here’s the kicker...this life-saving study, entitled "A new operation for congenitally corrected transportation, ventricular septal defect and pulmonary stenosis" by Constantine Mavroudis, MD, and this procedure, would not have happened if it weren’t for the generous funding that The Children’s Heart Foundation provided to make them possible.

Without this procedure, I, and the many CHD patients like me out there, likely would have had to settle for more temporary treatments for my conditions, which would have resulted in me having to go through the terrifying experience of putting my life on the line for at least two additional open-heart surgeries in the time since 1998.

Like many children growing up with CHDs, I always wondered whether I would still be around to see my 25th birthday, to graduate from college, or even to graduate from high school. If you would have told me I would be 31 years old, working as an attorney at an amazing firm, and living an otherwise completely healthy life, I would have told you that you were crazy. But here I am telling my story to you today, and, aside from my many great doctors at Children's Memorial and Lurie Children's Hospital, I only have The Children’s Heart Foundation to thank for this.

Read more stories here