One in every 100 kids are born with a heart defect. More than half of these kids will need at least one invasive surgery in their lifetime, and they don't come cheap.
In the United States, the total cost of these surgeries have exceeded the $2 billion mark. Now, a little girl and a musician are using their gifts to bring hope to the hearts of thousands of kids.
For singer Erin Bode, every song tells a story. But when a hospital asked her to write a song about one of its patients, she knew it would be special.
Katelyn Jackson was born with a hole in her heart. Because of it, Katelyn's spent much of her time at the hospital. For half of her life, she was on a feeding tube. An in her short ten years, she's had six open heart surgeries.
There are more than 40 types of congenital heart defects. They can't be prevented or cured. This year, 100,000 babies born with a heart defect will not live to see their first birthday.
"It's really good to know that I've been able to survive 6 times," said Katelyn.
Her story provided the lyrics. Her friends provided background. And thanks to a recording from a digital stethoscope, Katelyn's heart literally beats throughout the song.
“Another one of those meant to be moments like are you kidding me?” she said.
The track also pays tribute to heart patients who've passed, something Katelyn's mom and doctor both appreciate.
“That actually struck me right away and I just cried,” said Karin Jackson, Katelyn's mom.
“Katelyn symbolizes hope that’s probably the most important thing,” said Dr. Pirooz Eghtesady, Chief of Pediatric Cardiothoracic Surgery at Washington University School of Medicine.
While twice as many kids die from heart defects than cancer, funding for cancer research is five times higher. For singer/songwriter Erin Bode, its' a way to raise money and awareness.
“This is a very formative part of their lives and to be able to express it or talk about it or have it in a song I think is good,” she said.
For Katelyn, it's one more opportunity to share her heart.
“I think it’s just a miracle that I’m actually here,” she said.
You can download 'The Space Between' for 99-cents on iTunes. Part of the proceeds go to heart research at St. Louis Children's Hospital. It's likely Katelyn will need more surgery when she gets older. She recently helped raise money for heart disease research by jumping rope.