Dylan’s Heart Story: Reclaiming Courage Through Play
Facing an Impossible Decision
When Nicole found out she was pregnant with her first son, Dylan, she was overjoyed. She imagined all the little moments ahead: his first day of school, packing his lunch and watching him grow up.
A routine ultrasound at 24 weeks changed everything. The doctors noticed something wasn't quite right and rushed Nicole to a high-risk specialist. That's when they learned that Dylan had a rare heart condition called hypoplastic left heart syndrome (HLHS), which means his heart wouldn't be able to pump enough blood through his body.
Nicole and her husband were told there was only a 50% Dylan would live to see his first birthday. Doctors didn’t think Dylan would survive.
Nicole and her husband were in shock. Just minutes earlier, they had no idea anything was wrong. And suddenly, they’re being told all this.
They were taken to a quiet room, handed a box of tissues and given 30 minutes to make an impossible decision.
“We came out of the room,” Nicole recalls. “And we said, ‘No. We’re going to try to fight for him.’”
At the time, they were living in England, where Nicole’s husband was on active military duty. But to give Dylan the best care, they relocated to Texas.
One month later, Dylan was born.
Just seven days after, he had his first pediatric heart surgery.
Growing Up with Growing Strength
As Dylan grew up, living with HLHS was hard.
When he was little, even breathing took effort. His oxygen levels would drop, and simple things, like walking across his house, became exhausting.
Nicole recalls:
“Our house is not big by any means. But he couldn’t walk the length of three rooms without coughing to the point of throwing up because he was gasping for air so bad.”
Hospital stays became part of their routine. They happened so often that Nicole kept a “go bag” in the trunk, always ready.
An unexpected trip to the emergency room could happen at any moment: during a routine doctor’s visit, a day at the park or even a quick trip to the store.
Now nine-years-old, Dylan faces each hospital visit with remarkable bravery. When he once needed an IV, the staff offered him sedation because of how often he was in the hospital.
Dylan shook his head.
“‘No, thank you,” he said. “I'm brave. I don't need that ... You can just do the IV and you can do it now. I’m fine.”
This is usually how Dylan handles hospital visits. But one week, after appointment after appointment, he was simply worn out. As they walked towards the hospital, his shoulders slumped and his steps slowed.
“I don’t want to go in for this ultrasound,” Dylan said quietly to Nicole.
Nicole remembers it clearly:
“He was completely shut down. I felt like I was dragging him through the hallway. He wouldn’t talk to me, hanging his head down. He was mad. He didn’t want to go in and do anything.”
A Spark of Play, A Return to Happiness
As Dylan finally stepped inside the hospital, something caught his eye – a Starlight Gaming Station.
His eyes widened, and a big smile spread across his face. Suddenly, he was off, running toward it, bouncing from one Mario game to the next.
“It completely flipped a switch,” Nicole reminisces. “It was like my Dylan came back. He was happy and playful.”
That burst of happiness gave Dylan the boost he needed to get through his ultrasound. Nicole shares, “then he had had a liver scan for an hour and a half, but he was so happy during it ... It kind of made him a kid again, you know?”
Playing on the gaming station in the hospital made Dylan’s day. After that, he didn’t want to leave the hospital.
“He kept asking, 'Can we just stay and play with this? He was just so happy.”
- Nicole, Dylan's mom
This year, Dylan is turning ten – and he can’t wait. Turning double digits is a big deal for kids, and it’s especially meaningful for Dylan because he’s beating the odds he was once given.
“He knows his story of how he wasn’t supposed to be one,” Nicole says. “And now he’s going to be ten. He’s just like, ‘Yeah, but look at me. You don’t stop me. Look at me. I’m a whole decade further than you thought I was going to be.’”
This Heart Month, you can improve the hospital experience for children. Bring moments of play and happiness to kids facing serious illness – moments that help them feel like kids again.
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