At 20 weeks gestation Shepherd was diagnosed with Heterotaxy Syndrome. This condition is so rare there is not a birth rate associated with it. He was born via scheduled Caesarean section so that a team of cardiologists and surgeons were present and able to provide immediate medical intervention. His first open heart surgery was at seventy two hours of age to place a BT Shunt. A week later he had an abdominal surgery, followed again by a throat surgery two years later. His second open heart surgery was the bidirectional Glenn procedure when he was two and a half. The third procedure, a Fontan, was attempted when he was three years old, but they were unable to do it without creating more harm than benefit. This left him “blue” and as the years progressed unable to walk more than 15 feet or so before needing to stop and rest. With each surgery he experienced life threatening complications, but none as significant as his most recent surgery in June of 2016. His quality of life was so greatly diminished that his cardiology team decided that an attempt to complete the Fontan procedure was worth the risk. While the ten hour surgery itself went quite well, forty eight hours post-op he went into severe heart failure, and coded. What followed was nearly the entire summer spent in the hospital and nearly two years of recovery. By God’s grace and stellar medical care Shepherd is doing better now than he has ever before. His cardiologist even cleared him to go on a Hunt with Heart fishing trip. This event helped him to feel normal and allowed him to experience an amazing trip in an environment designed for kids with heart conditions. Shepherd has since been on another fishing trip with Hunt with Heart and is asking when he can go again! The amazing, kind, dedicated, talented and compassionate team that is Hunt with Heart, has made a lasting impact on Shepherd’s life and our family too. They have given him the opportunity to be a kid and be “normal” around other kids with heart issues. This has significantly enriched our lives and we are huge fans of Hunt with Heart. Our gratitude to the entire Hunt with Heart team is immeasurable.
Shepherd
On May 29, 2005, we welcomed our son, Braden James, into the world. We thought we had welcomed a perfectly healthy baby boy into our family but about 24 hours after his birth all that changed. At one day old, Braden was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a congenital heart defect where the left side of the heart does not form properly. Our tiny baby boy would require surgery to survive, and not just one surgery but a series of three open heart surgeries.