Shortly after learning they were pregnant with a little girl, Nicole and Andy Knapp went in for a routine appointment when an irregularity on the ultrasound raised concerns. The couple learned their daughter would be born with a congenital heart defect known as tetralogy of fallot with pulmonary artresia, a serious condition that would put her life in danger. She would need immediate and significant treatment after delivery, and lifelong care to keep her healthy and strong.
With their daughter facing multiple open-heart surgeries, and the family facing months away from their home, they made plans to stay at the Ronald McDonald House in Iowa City. “The staff at the House was amazing, and as soon as we met them, we could tell they genuinely cared about our family,” said Nicole.
Kaeli Knapp was born on May 11, 2018 at the University of Iowa Stead Family Children’s Hospital (UISFCH). At just 13 days old, she underwent her first surgery to place a shunt in her heart. The operation went as planned, but as the doctors were taking her back to her room, a blood clot developed around the shunt, which needed to be replaced immediately. Kaeli’s condition rapidly deteriorated, and Nicole and Andy watched helplessly as doctors worked to save her.
After the surgery, Kaeli seemed to be improving, but within hours, her condition worsened. To keep her alive, she was placed on an ECMO, a life-support device to help her breathe.
During this time, the couple had already checked into the Ronald McDonald House, but due to Kaeli’s critical condition, they could not leave the hospital. Thankfully, the Ronald McDonald Family Room in the PICU at UI Stead Family Children’s Hospital welcomed the couple whenever they needed a quiet place to rest, a cup of coffee, or a moment to breathe.
“Day to day, you never know what’s in store,” says Andy. “Sometimes you can’t bear to be too far away, other times the hospital is too much to take. So having access to both the House and the Family Room was a huge relief to us. Plus, it’s pretty incredible to have a home-cooked meal every night!”
Slowly and surely, Kaeli began to heal. She was taken off the ECMO and over the next few weeks, made progress. However, Kaeli’s shunt began to close off and she would undergo yet another surgery.
This time, everything was successful—though Kaeli would spend another 123 days recovering in the PICU. Back at the Ronald McDonald House in Iowa City, her parents found a home-away-from-home. No matter what the circumstances were at the hospital, the staff, volunteers and other families staying at the House helped give the Knapps the hope and courage to stay strong for their daughter.
“They gave us an ear to vent to, a face to talk and laugh with, and a shoulder to cry on,” said Nicole. “When you have nothing at that point and all you’re hanging onto is what the doctors can do for your family, the Ronald McDonald House is someone that steps in. They’re the ones that are there for you, that take care of you. When we came to the House, I didn’t even feel like a parent—it felt like I was being parented by the Ronald McDonald House, that’s how much they were there for us.”
In addition to emotional support, the Ronald McDonald House made sure the Knapps had toiletries and daily supplies, access to transportation, and could relax and take their minds off their situation.
“It’s a place where families can come to relax and get to know each other. We all have something in common—we have a kid who’s really sick and in the hospital—but for a few hours or a few days, you can just forget about that and sit down together for a nice meal,” says Andy.
Today, Kaeli is thriving at home with Mom and Dad. She’ll face more surgeries as her body grows, but the Ronald McDonald House will be there for the Knapps when it’s time to return to Iowa City.
