CHAMP: Katelynn’s Story

Meet Katelynn

Katelynn’s journey with Children’s Mercy began before she ever took her first breath. 

In 2016, Katelynn’s mom and dad, Kim and Chris, were 30 weeks pregnant with her when they learned something wasn’t right with their unborn daughter’s heart. What followed was a rapid series of appointments, from the OB to specialists in Wichita and then to Children’s Mercy in Kansas City. With both parents working and twin toddlers at home, the 3-hour drive felt overwhelming. But Kim and Chris understood that they needed the highest level of pediatric expertise for their daughter. 

“We were so thankful that we were only 3 hours away and had Children’s Mercy,” Kim says. “But the travel was incredibly demanding for our jobs, for our family and for our other kids.” 

Katelynn was born at 37 weeks at the Elizabeth J. Ferrell Fetal Health Center, weighing just 3 pounds, 10 ounces. She was no bigger than a loaf of bread. She was diagnosed with a complex congenital heart defect that included severe pulmonary stenosis. Her heart was too fragile for immediate surgery. First, she had to grow stronger. 

That meant weeks in the neonatal ICU. Kim stayed at Ronald McDonald House during the week while Chris remained in Wichita with their twins, switching places on weekends so each parent could be where they were needed most. “The first 3 months of her life, Katelynn lived at Children’s Mercy,” Kim says. “And we lived there too.” 

When Katelynn was finally strong enough, surgeons placed a shunt to improve blood flow to her lungs. What they hoped would be a straightforward recovery became anything but. Katelynn coded twice within 24 hours. She spent longer on a ventilator than expected. Infections followed. Setbacks piled up. It was three months before Katelynn was well enough to go home for the first time.

“She’s not a textbook case,” Kim explains. “She keeps everyone on their toes.” 

As she grew, Children’s Mercy continued to surround her family with coordinated, specialized care. Between surgeries, the Cardiac High Acuity Monitoring Program (CHAMP) allowed the family to send daily health data from home, reducing the number of trips to Kansas City. When Children’s Mercy expanded specialty care in Wichita, it eased the family’s travel burden even more, since some of their check-ups could take place closer to home. 

“We can do this in Wichita? We don’t have to drive back to Kansas City?” Kim remembers thinking. “That was amazing.” 

Six months later, during her second open-heart surgery, Katelynn suffered a stroke while on heart-lung bypass. What should have been a week in the hospital turned into a month in the hospital, and then Kim and Chris brought home a baby who had to relearn how to eat, grasp toys and move her body. Physical therapy became part of daily life. But slowly, and remarkably, Katelynn progressed. 

Now, many of Katelynn’s cardiology appointments and monitoring visits happen close to home. Instead of missing entire workdays or arranging overnight childcare, the family can step away for an hour and still know Katelynn is receiving the same expert care.

That access matters, especially for a child who has already undergone 4 open-heart surgeries, multiple valve replacements and pacemaker procedures. In 2023, Katelynn faced heart failure, with her heart function dropping to 30%. New medications and a valve replacement helped raise her heart function to the high 40% range. Then another pacemaker surgery brought her into the mid 50% range. 

“If this is Katelynn at 40% and 50%, I’d love to see her at 60% or 70%,” Kim said. “Most people would have no idea she’s in heart failure.” 

And that’s the part that often surprises people most. 

Today, Katelynn is a confident, energetic 11-year-old who dances, cheers and plays softball, basketball and soccer. While she still has limited heart capacity, she makes it very clear that it’s her life and everyone else is just living in it. She’s mostly on grade level at school. Sure, she gets tired more easily than other kids, but she’s determined to keep up. 

“She lives a relatively normal life,” Kim says. “Yes, this is part of what she has to deal with, but it’s not who Katelynn is.” 

Katelynn’s parents know how different their story could have been without Children’s Mercy. Having pediatric specialists who understand complex heart conditions closer to home has made an incredible difference for their family.

“To have more specialists here in Wichita, that knowledge base at our fingertips, would be invaluable,” Kim says. 

For families like Katelynn’s, Children’s Mercy isn’t just a hospital. It’s a lifeline that extends beyond Kansas City and into their own community. Having access to Children’s Mercy specialists closer to home means fewer long drives, fewer missed workdays and more time focused on what matters most: helping Katelynn live her life. As Children’s Mercy continues to expand care across the region, families like Katelynn’s can count on expert pediatric care being there when and where they need it.