On May 8, 2024, Bon Secours – St. Mary’s Hospital staff paid tribute to 15-year-old Carter Epperly with an Honor Walk in appreciation for his gift of organ donation. His mother, Margie, shared about his resilient life and the life-saving gifts he left for others.
Carter was born at Bon Secours – St. Francis Medical Center on February 27, 2009, and stayed in the NICU for more than two months. During his time in the NICU, he was diagnosed with an extremely rare genetic disorder called 6q duplication syndrome. He was also diagnosed with neonatal diabetes mellitus, which ended up being temporary as his pancreas finally decided to kick on and do the work just before we left the NICU. While in the NICU, Carter had two favorite nurses – his “girlfriends” Emily McEwen Anderson and Tara Danner, who remain family friends to this day.
Carter was sent home from the NICU with Noah’s Children, and we were told he was on borrowed time. How long that would be, no one could really tell us. Even if he was able to beat those odds, they shared he likely would never talk or walk. Carter was nonverbal but used his talker (LAMP software on an iPad) to communicate with the world around him. He had a wicked sense of humor, and his smile and laugh
were contagious to all who came in contact with him.
Carter’s condition caused him to have joint contractures of the legs and hands, when muscles, tendons, skin and tissue permanently tighten. He endured several surgeries to lengthen tendons in his hamstrings and Achilles, and in July of 2022, he had surgery to shorten his femurs and straighten his legs as his leg contractures had forced him into a wheelchair. He was in casts for six weeks from the toes to the hips, and after the casts were removed, he had countless hours of physical therapy with his provider, Courtney, to strengthen the muscles needed to learn to walk again.
He didn’t learn how to walk for the first time until right before his eighth birthday. Then, in December of 2022, he took his first unassisted steps after surgery, and we were so proud of him.
Carter also had a condition called immune thrombocytopenia, or ITP, where his platelet count was low. He was diagnosed by his family physician, Sharon Joseph, MD, at Powhatan Medical Associates. He had many IVIG infusions to keep his platelet counts in a safe range.
On May 4, 2024, our Carter was found in cardiac arrest and was revived after more than 30 minutes. At St. Mary’s Hospital PICU, we were surrounded by the greatest team of doctors and nurses I’ve ever encountered. Jahee Hong, MD, was one of the best doctors I’ve ever seen, and the way she explained things to her nurses to teach them was heartwarming. Her bedside manner during a difficult time was second to none. She even stayed past her shift to finish the second brain death diagnosis because she wanted to see it through to the very end.
Unfortunately, after all the fights he’s fought, this was one he couldn’t win.
We had originally planned to withdraw life support but decided to pivot when we learned Carter could help as many as seven people through the donation of his organs. He remained on life support to preserve his organs while they looked for homes for his gifts. It only seems fitting that the kid who touched and inspired so many people in his life should continue to do big things in his death by giving life to others.
The PICU at St. Mary’s has some very special folks. All the nurses were absolutely amazing, but the two nurses who gave care above and beyond the call of their jobs were Leslie and Hannah. Leslie took care of Carter during the day shift each day that he was there, and she treated him like her own son. She bathed him, fixed his hair and ensured he was looked after continuously. Leslie is something so special, and she has become like family to us. Hannah was his nighttime nurse. Leslie and Hannah both wheeled Carter’s bed during his Honor Walk to the OR, and Leslie even went into the OR with Carter because she wanted to stay with him.
Carter was a fighter all his life. He fought to beat every odd and endured his endless medical appointments, therapies and surgeries with a smile. The staff in St. Mary’s PICU made sure that we had all the memories we could make with Carter while he was there, and they felt honored to be a part of Carter’s care, having heard all the stories of what an incredible and resilient boy he was.
Coordinating the Honor Walk for Carter was a wonderful tribute to what Carter accomplished in his short 15 years here and what he would give in his death. We learned that Carter’s liver was successfully transplanted, as was one of his kidneys, so he has already saved two lives with the potential to save up to four more with his heart valves.
My husband, Jeff, and I would like to extend our heartfelt thanks to Bon Secours for caring for Carter from birth to death.
Read more stories from our patients at Bon Secours.
