Leo’s mother, Valerie Miller, shares her son’s story with the Eastern States blog. Leo is the Honorary Chair of the 2021 Charleston Heart Walk.
Leo was born in March of 2018 after a normal and healthy pregnancy with no inclination of anything being wrong. While waiting for discharge papers, the pediatrician came in and told us that not only did Leo have a broken collarbone, but that he had a significant heart murmur. She consulted cardiology and ordered an ECHO just to be safe. I immediately knew that something wasn’t right though. When the cardiologist, Dr. Patel, came in, she informed us that Leo had been diagnosed with Tetralogy of Fallot (TOF). It was probably one of scariest moments of my life.
TOF is a lifelong congenital heart defect that requires surgical repair. It causes deoxygenated blood to flow from the heart causing blue-tinged skin and shortness of breath. All things considered, Leo was doing quite well. He was able to maintain his oxygen saturations and continued to gain weight well in preparation for open-heart surgery.
At three months of age, weighing 17.5 pounds, Leo had his surgical repair of TOF at Ruby Memorial Hospital in Morgantown. His surgery went just as expected and had minimal to no complications. He immediately looked better with rosy cheeks and pink lips, something he had never had.
Leo is now a thriving 3 1/2 year old. He knows no bounds and is wide open all day long. He is currently doing fantastic, and is able to play his first year of little league soccer this fall. Leo will have to be monitored and a second open heart surgery will most likely have to occur in 10 to 15 years, but for now he is fantastic. We are so thankful for the grace that God showed us during this time. I know without our faith we could not have managed some of the scariest times of our lives like we did. The peace that God gave us is unexplainable but something I will always be grateful for.
You can see Leo’s story in the video below:
Kevin is the Communications Director for West Virginia and Western Virginia. When not in the office, Kevin is an active performer with the State 35 Comedy Troupe and is the founding member of the Ghostbusters – WV Division fundraising team. He has been with the organization since 2005.