COTA for Isaac's Hope

Our Story

Isaac was born with a rare and complex congenital heart defect. He is considered “single ventricle,” which means instead of having two ventricles (one that pumps blood to the lungs and one that pumps blood to the body) he only has one. Babies born with this condition often have a series of 3 palliative surgeries: one at birth, a second one between 6 months and 2 years and another between 4-6 years old. Isaac had his first surgery, called the Glen, when he was 2 years old. At 6 years old, while still living in China, he had the fontan surgery. He was doing very well when we brought him home to Kentucky at age 11 and has continued to grow in height, weight and fitness abilities over the 5 years he has been with us!

In December of 2023, Isaac underwent an exploratory heart cath to determine the cause of some conflicting test results. His heart pressures were good, but he had failed two pulmonary stress tests. They discovered that his fontan was full of holes and needed to be revised sooner rather than later. This was surprising because Isaac appeared to be in such good shape and feeling well, but we knew his fontan was a ticking time bomb. We had to intervene, and we were excited to see how much better he would be with a new fontan!

Isaac’s surgery went beautifully in July 2024 and he was on the road to being released from his 6 week post-surgical restrictions. But, around 5 weeks post-op, during his first week of high school, he began experiencing disturbing GI issues and unusual fatigue and weight gain. One week later we learned he was in heart failure. His fontan looked beautiful, but his one pump was squeezing at only 50%. After about 5 weeks in the hospital, Isaac’s heart team, along with Larry and I, agreed that his heart could not be recovered and it was time to list him for a new, 2-ventricle heart.

Isaac has been put onto the Heart Transplant list.  He is listed at 1B status, which means he can wait at home for a heart instead of waiting in the hospital. Isaac takes many medications to help give his heart all the support it needs while he waits. He is enjoying extra time at home with family as he completes his first year of high school through home hospital. He is looking forward to celebrating the holidays and getting a new heart in the new year!

We have teamed up with the Children’s Organ Transplant Association (COTA) which helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.