Nine-year-old shares story of surving rare heart defect

Nine-year-old shares story of surving rare heart defect
Published: Feb. 3, 2023 at 10:17 PM EST
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GEORGETOWN, Ky. (WKYT) - On National Wear Red Day, A nine-year-old girl is sharing her story of surviving a rare heart defect.

From the moment Story Hill was born, she faced several surgeries and challenges, but now she is a bouncing nine-year-old girl.

“She had her first heart surgery within a few days of her being born,” said Story’s mom, Lauren Hill. “We were in and out of the hospital that first year of her life.”

Story was prenatally diagnosed with Hypoplastic Left Heart Syndrome. It affects the structure of the left side of the heart and prevents valves from fully developing. Each year, the CDC estimates 1,025 babies are born with this condition.

“It was very, very hard because we didn’t know if she was going to make it or even if she would live to her first birthday,” Lauren said.

For months, each day was a blessing for Story’s parents, Lauren and Adam, relying on their faith to get them through the tough days. It’s even how they decided on Story’s name before she was born.

“That was the only name we could agree on before we found out about the heart defect,” said Lauren. “And then when we found out about her heart defect, I was like, ‘It definitely needs to be Story, because God’s going to have a story to tell through her life.”

At just nine months old, Story had a heart transplant.

“I felt like I got the breath knocked out of me,” Lauren said. “I remember it so vividly. I was standing over her little bed, and we knew her heart was in severe failure at the time. But we thought, maybe we can do different medicines or the third surgery a little bit sooner.”

Fast forward to today, Story is a healthy nine-year-old girl who loves math class.

And on this Wear Red Day, the Hills wear it proudly, supporting the millions of Americans, regardless of age, who have their own story.

“I just want them to know that God is with them and that you just have to keep on hoping even though it’s hard. You will always have miracles at the end,” Story said.

The Hills go to Columbus every three months for heart check ups.

They hope that by sharing their experience, it will be the encouragement families in a similar position need to hear.