On his fourth birthday in 2013, Colton Egan, of Sterling, Illinois, was in a Peoria, Illinois, hospital with an E. coli infection. Colton developed hemolytic uremic syndrome (HUS), a condition caused by E. coli that resulted in kidney failure.

Colton spent months in the hospital, first in an induced coma and on dialysis and then in rehabilitation. He went home in January 2014 with his kidneys working on their own.

Nine months later, he was back in intensive care in full kidney failure and would need dialysis as a bridge to kidney transplant.

One visit and they knew they’d found home

When Colton’s parents, Sarah and Jeff, learned that Colton needed dialysis and a transplant, they made it their priority to find specialists who understood kids. The dialysis program in Peoria, 90 minutes from their home, was for adults.

The family’s list of programs to visit was short—UI Stead Family Children’s Hospital and a hospital in Chicago.

“We visited UI Stead Family Children’s Hospital first and just fell in love with it,” Sarah says. “It had a family vibe and felt like home as soon as we got there. We didn’t even go to Chicago.”

With Iowa’s only pediatric dialysis and transplant program, UI Stead Family Children’s Hospital offered the experience the Egan family wanted.

The Peoria program performed only two to three pediatric transplants a year. UI Stead Family Children’s Hospital specialists performed 13 pediatric transplants in 2019.

Empowering care and support

The UI Stead Family Children’s Hospital Pediatric Kidney Transplantation Program also provided the comprehensive care the Egan family knew Colton would need in the years ahead.

Care goes beyond dialysis and transplant. It’s the years of aftercare following the child. We want our patients to do regular kid things and grow up to be successful young adults. As kids get into their teen years, we begin training them to be adults with a kidney transplant.

Lyndsay Harshman, MD, medical director of the program and Colton’s nephrologist

The family chose home peritoneal dialysis. Jeff and Sarah underwent hours of training to learn how to oversee the process Colton would go through every night while he slept.

“They accept parents as part of the care team, training us to be the best caretakers possible,” Sarah says. “They empower parents to be an advocate for their kid.”

Sarah says they felt welcomed home at every appointment Colton had at the dialysis center.

“Someone always asked, ‘How can we work with you to best help you?’”

Colton’s dialysis nurse, Jen Ehrlich, RN, knew just how to interact with him.

“She met Colton at his level, wherever he felt comfortable, even if that meant checking his blood pressure when he was on the floor behind a chair,” Sarah says.

‘A new kid’ after transplant

Colton started the transplant process, which involved undergoing testing and finding a donor. Tests revealed Sarah and Jeff were both a match to be Colton’s donor. The team reviewed the results and recommended Sarah as the donor.

“Since Colton’s health journey started, medical concerns were part of Colton’s life,” Sarah says. “Dialysis made him tired all the time. People told me we’d see such a huge change after his transplant. It was hard to imagine what that would be like.”

On surgery day, Jeff was able to go in with Colton to the operating room and stay by his side until Colton was sedated.

“Allowing Jeff to do that little thing on such a stressful day meant the world to us,” Sarah says.

Sarah’s surgery went smoothly, as did Colton’s.

“The surgeons were absolute rock stars” Sarah says.

Two days after surgery, as promised, Colton was a new kid, running around the hospital.

Colton Egan 3 years post transplant
On the third anniversary of his kidney transplant, Colton celebrated with a dip in the pool.

UI team support makes a difference

As the family adjusted to post-transplant life, Sarah was grateful to continue to receive support from the care team.

“Whenever I feel like something’s not right, I have email or an on-call number to use,” Sarah says. “Having that support system behind you makes you feel like you can handle anything.”

Harshman says staying on top of any concerns is vital for dialysis and transplant patients.

“That’s why we tell families to call for anything,” she says. “For a child on dialysis or post-transplant, something as simple as a fever can be life or death.”

Five years later, with Colton enjoying good health, Sarah appreciates the difference their UI Stead Family Children’s Hospital care teams made.

“We felt alone with outpatient care before” Sarah says. “Having UI in your corner is so amazing. It’s why we drive there.”

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