Heart Month with Waylon

In recognition of American Heart Month, members from the Speak Now for Kids community will share their personal experience of raising a child with a congenital heart defect (CHD). Today, we will hear from Waylon’s mom, Tabitha, on how she’s currently raising awareness for Waylon and kids like him.

Waylon was born with hypoplastic left heart syndrome (HLHS). We learned about his heart condition at my 22-week ultrasound. We found out that there were only three chambers to his heart. His initial diagnosis was severe aortic valve stenosis and that quickly transitioned to HLHS. We were given many options after finding out his condition, but we chose surgery to give Waylon a chance at life. We were scared, it was like being hit by a truck in a moving tornado. Our lives changed at that moment. Being parents of a child with coronary heart disease (CHD) has been full of surprises, questions and constant research to ensure the best care for him.

We had to travel six hours away from our home state, Kentucky, for his surgery. Waylon was initially treated at Kentucky Children’s Hospital, where he was born. He spent the first three months of life there. He suffered major complications, including chylothorax, brain bleeds, seizures, multiple major infections, Hypoxic Ischemic Encephalopathy, and TRALI (transplant related acute lung injury). After finding out that his lead surgeon took a leave of absence and the pediatric heart program shut down, we air lifted to Ann Arbor, Michigan, for continue care for Waylon.

Waylon underwent his second palliative open heart surgery at four months at C.S. Mott Children’s Hospital. By then, Waylon received care from multiple specialists across state line. Even though he sees his cardiologist every three to six months back home in Kentucky, the rest of his care is in Michigan. He sees a heart surgical team, neurologist, ophthalmologist, orthopedic and many different therapists to improve his quality of life.

Waylon has undergone three open-heart surgeries so far, and he will likely be facing an eye surgery this year. Without Medicaid, Waylon would not have survived. His first month of life at our local hospital racked up a bill of $1.2 million. With all of Waylon's subspecialties and diagnoses, he has to see multiple doctors and specialists. Waylon also relies on medical equipment not only to survive, but to have any quality of life. We are a one income family, with two other children. 

I advocate for my Waylon’s health care by constantly researching new medical procedures to ensure the best care for Waylon. I joined the Pediatric Congenital Heart Association to stay informed and connect with other parents, and to have easier access to my state representatives and providers. I want to help make a larger impact on not only my own child's insurance coverage but many other families in the same situation.

Though this little guy has been through the unimaginable, he is the happiest kid you will ever meet! He draws attention from everyone when he walks into a room. Waylon loves video games, which has really helped with his cortical visual impairment. He also loves being at the gym where his father, myself, and siblings train. We teach Brazilian Jiu Jitsu, and do Mixed Martial Arts, which has become a huge coping mechanism for our family. Waylon will jump in a class sometimes to join the other kids ― he still tries his best even when he can’t keep up with. Even though Waylon is limited to what he can do because of his condition, he will always try his hardest!

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