Hi my name is Mikayla and I am Waylon’s second cousin. Waylon’s mom, Samantha, and dad, Lloy, have 2 handsome boys. Wesley is a healthy 4 year old and his little brother Waylon was born August 30, 2022. While Samantha was 20 weeks pregnant with Waylon she found out that he has Hypoplasty Left Heart Syndrome. HLHS is a congenital heart defect, meaning it is present at birth, there is nothing Samantha could have done to prevent it. It is a defect that affects normal blood flow through the heart, during pregnancy the left side of the heart does not form in the correct way. After Waylon was born, they found out he has Shones Complex, which is HLHS with aortic and mitral stenosis and this only happens in less than 1% of babies with heart defects. Shone’s Complex is a congenital heart disease which affects the blood flow into and out of the left side of the heart, being that the left side of Waylon’s heart does not work, this was not ideal. 

There are three surgeries to help the heart function better, but they do not cure HLHS. Waylon has had three open heart surgeries so far. On September 7th 2022 Waylon had the Norwood Procedure which is the first surgery done to correct his heart, this surgery usually is done within the first two weeks of the baby’s life. On December 10th 2022 he had the Glenn Procedure which is the second surgery, this one is done between 3 to 6 months of the baby’s life. On December 15th, 2022 he went into cardiac arrest for 30 minutes, and they had to place a breathing tube and put him on ECMO until December 18th. Waylon never got the last surgery, the Fontan Procedure, which is done between 2-4 years old. 

Waylon came home in February 2023 for the first time, but was life flighted in April back to childrens after his oxygen dropped into the 40s. He was sent home about a week later, but then in May we had to take him back due to his oxygen dropping into the 70s, on our way there it dropped into the 40s again so we had to call an ambulance to come get us in the middle of traffic. His doctors found that he was sick with the rhinovirus, which is what was causing his oxygen to drop. He stayed in Pittsburgh’s Children’s Hospital for about 2-3 weeks and was sent home with twenty-four hour oxygen. Later we found he formed collaterals, which was making it hard for him to breathe, because the collaterals were putting too much blood into his lungs. Soon after he was sent home. 

Waylon and a bunch of his family and friends who went to Florida for vacation in August 2023, his oxygen dropped while we were there a few times but nothing to cause much concern, but what concerned us was the swelling in his face, arms and legs. We assumed it was because of the humidity, but once we got home his oxygen was still low and we couldn’t wean his oxygen to his normal amount. Samantha contacted his doctor and they decided to do a heart catheterization. When they completed that, they found out that the second surgery, the Glenn Procedure, was failing and he had formed a lot more of these collaterals. Waylon’s surgeon had to operate on him, September 18th 2023, to undo the Glenn Procedure and put a new shunt in place, going back to his first surgery anatomy, which isn’t safe being that he is growing quickly. 

So on September 29th, 2023 he was officially placed on the heart transplant list. 

Waylon has not been able to develop the strength and mobility that babies his age should have. He does what he can, but he gets very frustrated that he cannot do more. He gets physical and occupational therapy everyday and he gets stronger with each visit. He does have a gastrostomy tube (G-Tube) and is unable to eat orally, though he does put everything in his mouth. He is a very happy kid. He is always smiling and laughing at something, mainly his older brother’s goofy faces.

Every family member, friend, nurse, doctor and anyone else who has met Waylon, has found him to be one of the happiest kids. Everyone has a lot of love for him and loves being in his presence. Somehow he always makes everyone feel loved and happy. We hope that once you hear his story and see his pictures, you will feel the same.

The Children’s Organ Transplant Association (COTA) 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.