My Doernbecher Story

Tylan's Story - Doernbecher Children's Hospital

Tylan's Story

By Heather, Tylan's mom

When I was seven months pregnant with Tylan, we learned he had a heart defect. We went to Doernbecher for a second opinion. They confirmed Ty's diagnosis— a rare condition called truncus arteriosus. He had one large blood vessel instead of the two main arteries to his heart: the aorta and pulmonary artery, and his heart was leaking blood.

After that, we came to Doernbecher for all Ty's care. He was delivered at Doernbecher, and had surgery five days after he was born: The doctors put in a conduit (in place of his heart's truncal valve) which would help with circulation and leakage.

When Ty was 11, he had surgery to replace both his conduit and aortic valve. Dr. Stephen Langley did the procedure. Before surgery, Ty was anxious. He kept asking Dr. Langley, "What if I don't wake up?" Dr. Langley assured Ty he'd do great. After the surgery, Dr. Langley came into Ty's room and joked, "So I held up my end of the bargain, right?"

The ICU is a stressful place, and we had a lot of family there. No staff ever treated us like we were in their way. When Dr. Langley came into Ty's room, and a grandparent would be there, he'd shake everyone's hand. I slept in Ty's room every night he was at Doernbecher for surgery, and nurses fetched me warm blankets. We had one nurse in the ICU who was especially amazing: We called her "The Closer." She'd just come in and be able to get Ty to do whatever we needed him to do.

The Doernbecher Child Life team was wonderful. One of their specialists, Jan Crider, took Ty on a tour of the hospital after he was done with his pre-op appointments. She made sure all his siblings were taken care of during the 10-hour surgery. She also checked in on Ty every day in the ICU, bringing him things to lift his spirits.

Ty is doing really well now: He likes to ride his bike and scooter, play baseball and spend time outdoors. He is a great big brother to his three (soon to be four) younger siblings. He's a sweet boy with a big heart.

We now see Dr. Carlson at Doernbecher, anywhere from every 3-6 months to annually. Ty probably won't need surgery for a while, but when he does, we'll talk with Dr. Carlson, Dr. Langley and the team about what's going to be right for Ty. They always understand that he has a say in his own health—it's his body, after all.

I can't say enough about Doernbecher. I can call them with any questions I have and they never make me feel like I am burdening them. I would tell anyone to go there.

 

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