Katelyn with docsWhen Karin Jackson first greeted four-month-old Katelyn after the infant’s heart surgery, she breathed a premature sigh of relief. 
“I thought we were done at that point,” explains Karin. “I had no idea that was just the beginning.”
That moment sparked a journey that, after ten years and six surgeries, is still unfinished.
“It’s a bumpy road, but at least it’s a road,” says Karin. 
Katelyn has a defect called complete AV canal. Instead of four separate chambers, she had a hole in her heart where all the blood - oxygenated and non-oxygenated – ran together.
“She got pretty sick, but her nurses and doctors helped her get through those times. We’re so grateful that she has been given the opportunity to grow up with us, to be a ten-year-old little girl.”
It’s likely Katelyn will need more surgery when she gets older. But until then, she is a healthy little girl who rides her bike, jumps rope and recently won the first round of her school’s fourth grade spelling bee by correctly spelling ‘orchard.’ 
Now, she has a new hobby.  Singing.
In fact, her whole family – including 10-year-old twin brother, and younger brother and sister - has been singing a new tune around the house, a personal tune. St. Louis singer and songwriter Erin Bode composed it just for Katelyn.

“It was such an amazing opportunity not just to promote Children’s Hospital, but to give Katelyn a chance to share her story,” says Karin. 
With great honesty and candor, Katelyn shared the details of her personal journey with Erin – explaining all the emotions she’s experienced, like fear during the sick times, as well as uncertainty during the healthy times.  But the song was not ready yet. 
With help from Dr. George Van Hare, co-director of the St. Louis Children’s and Washington University Heart Center, Katelyn created a live recording of her heartbeat and shared it with Erin, who used the heartbeat as the rhythm track for the Katelyn-inspired song, “The Space Between.”  Katelyn’s heartbeat is the backbone – no, the heart – of the recording.
“We wanted to make sure that we took people on a little bit of a journey and allowed them to feel some of the challenges that one goes through when they are dealing with an illness,” explained Bode. “There may be dark times, there may be challenges in life but then the hope comes in a certain point in the song where you can see light and you can see tomorrow and you can see all the potential that life has and all the beauty in life.”
Music is just the latest tool Katelyn has used to share her story and provide hope to others. She raised money for heart disease research by jumping rope; she personally delivered Valentines to young heart patients; she donated her own personal gift cards to families in the Cardiac Intensive Care Unit.
“She wanted the moms and dads of those babies to know there is hope,” says Karin. “It is challenging, and every day here may be hard, but she just wanted them to see that there is life after this.”
As for Katelyn’s life after this latest project, her mom says there’s a reason Katelyn is still here with us.
“She's going to be something amazing. She's something amazing today, but I think in the future she's going to be a star one way or the other.”


Patient Stories