Kidney Transplant Gives Active Toddler a Better Normal

Jett's life journey so far has been short, but full. At the 18-week mark of her pregnancy with Jett, Allison Casey had an ultrasound that revealed concerns. The baby's bladder and kidneys were enlarged. Further evaluation uncovered PUV, in which extra tissue in the urethra blocks normal urine flow. The fluid backup can damage the bladder and kidneys as well as the lungs and heart.

Specialists at the Caseys' local hospital monitored the pregnancy closely, and when fluid began to build around the baby's heart, Jett was delivered by cesarean section. Procedures to protect the heart and lungs were successful, eliminating life-threatening danger, but leaving Jett still without kidney function.

Jett was transferred to Children's Mercy Kansas City. There, the family worked with pediatric nephrologist Vimal Chadha, MD, to initiate and discuss the management of dialysis and its complexities in a small baby. An additional health challenge – an extremely sensitive gag reflex – required a gastronomy tube, called a G-button, to deliver nutrition directly to Jett's stomach. The family learned to manage Jett's needs.

Once home, the Caseys administered nightly peritoneal dialysis, a 10-hour process to cleanse Jett's body of the waste products usually removed by the kidneys. Sisters Jaiden and Jovie assisted, and the family spent evenings in the Caseys' master bedroom, where friends would even visit and play cards while Jett relaxed in his swing before bedtime.

"Transplant was a pipe dream at first," says Jerry, who regularly wears bowties – handmade by Allison – to promote good cheer and spark conversation. "It wasn't something we spent much time discussing until it became a real option. We took the process one step at a time."

Once Jett weighed about 24 pounds, the Caseys began to explore transplant. As they learned more about it, they hoped they would find a living kidney donor for Jett. Kidneys from living donors are typically healthier than those from deceased donors, and the opportunity alleviates long waits for organs.

"Unfortunately, on average, 4,000 people waiting for a kidney pass away every year before one becomes available," says Melissa Fowler, RN, living kidney donor coordinator at The University of Kansas Health System. "Living donor programs improve transplant success and increase opportunity. Those who feel called to make such gifts are truly incredible people."

The Casey family felt a living donor scenario would provide more control and less emotional unrest.

"I know how I have taken care of myself over the years, and I would be able to control how I would prepare my body for the procedure and donation," Jerry says. "And we wouldn't have another family to think about. I can't comprehend the emotion that others feel, the remorse from knowing that one family had to lose a loved one for another to receive the gift of life. We preferred to handle this within our family if we could."

After thorough evaluation, the Caseys learned they could do exactly that. Both Jerry and Allison proved to be matches for Jett.

"Getting that phone call was just surreal," Allison says. "I had no doubt one of us would be a match. I believed it. When we both matched, we were absolutely blown away."

"When the hospital called and said, 'We don't have to put him on a waiting list,' the weight just came off our shoulders," Jerry adds.

With both parents eager to help improve their son's quality of life, the choice came down to practical matters.

"I have great life insurance," Jerry says. "And my children need their mom."

Reinforcing their decision, the couple then were overjoyed to discover Allison was pregnant.

Jett would receive transplant care at Children's Mercy.

"I have cared for him since he was just 2 weeks old," says Dr. Chadha. "I focused on providing comprehensive care until Jett's body was large enough to receive an adult kidney. Once Jerry Casey was approved, radiologists at Children's Mercy printed a 3D model of his kidney to ensure the adult organ would fit in Jett's body. The partnership between his family and physicians was critical to successful care. Jett has a strong, stable, committed family, and they made the difference."

The Caseys chose The University of Kansas Health System for Jerry's care.

"Our doctors at Children's Mercy gave us several options, and I just said, 'Which would you choose?'" Allison says. "I trust this team with my children's wellbeing, so I trusted the recommendation for Jerry's care, too, without hesitation. Let's do it!"

In a carefully orchestrated process, physicians at The University of Kansas Health System removed a kidney from Jerry Casey and transported it to Children's Mercy, where surgeons Walter Andrews, MD, and Bartholomew Kane, MD, transplanted it into Jett Casey's small body. Just 10 days later, Jett headed home, the doctors describing the surgical process as "textbook."

"The procedure went extremely smoothly," says Sean Kumer, MD, PhD, transplant surgeon at The University of Kansas Health System. "We have a tremendous amount of experience in organ transplantation and an excellent partnership with Children's Mercy. In addition, we have a huge infrastructure of support professionals, from nurse coordinators to social workers. A lot of people spend a lot of hours dedicated to supporting transplant patients in every way. Together, this team helps make a complex process roll out in a very organized way."

The Caseys complimented the collaboration between The University of Kansas Health System and Children's Mercy in ensuring the day unfolded seamlessly and successfully.

"The teams are so connected, so coordinated," Jerry says. "There is really great communication among the team members. We felt very comfortable with the whole process."

This was especially important to Allison. As she could not simultaneously be with Jerry and Jett, she and Jerry decided she would remain with their son before, during and after surgery.

"There were a lot of logistics to manage," she says. "Both hospitals had transplant coordinators, and they were amazing. I never even met the team that took care of Jerry, though we spoke often by phone. Even though it's my nature to do it, the coordinators never gave me a reason to doublecheck on anything. They were always on top of it, and did such a great job preparing us for what to expect."

"The partnership between Children's Mercy and The University of Kansas Health System runs like a well-oiled machine," Dr. Chadha adds. "We always want the best possible outcome for every patient, but this one was truly exceptional."

"After surgery, Jett didn't miss a beat," Allison says. "He was right back to it, playing, sitting, babbling. He doesn't seem a bit different. He's never known any different. This has just been his normal."

Jerry recovered quickly. Dehydration and diabetes are the primary concerns for him moving forward in life with a single kidney, but Jerry, an avid runner, is already committed to good health.

"I have to be more conscious of the decisions I'm making for my body," he says. "I have to listen. When it says it's thirsty, I need to drink. When it says it's tired, I need to sleep. But I really don't have to make significant life changes, just focus on healthy choices we all should be making."

While Jett still relies on the G-button for the majority of his food and fluid intake, he is receiving occupational therapy to learn to suck and chew and has begun sampling foods by mouth. Spaghetti sauce, yogurt and Teddy Grahams are early favorites. Jett won't ever play contact sports, but should otherwise face few restrictions.

"It broke our hearts that he could only stand outside the bathtub and reach in, or dip his toes in a pool," Jerry says. "Kids love water. Now he can get properly wet!"

Jerry and Allison look forward to new freedom not just for Jett, but for the whole family.

"We have always worked very hard to make this not a one-person thing," Allison says. "We are all in it together. The girls have always been helpers, carrying dialysis bags and turning on the machine. We all shared in this and carried on with our lives as normally as we could. Now, we can go to the pool. We can go out to dinner. Our family can enjoy the little things."

Jerry agrees that while day-to-day requirements will get easier, the important things are just the same.

"We've always treated Jett like a regular old kid," he says. "We wrestle. He messes around with our dogs, and they run him over right and left. He has not been handled with kid gloves. He is, and has always been, all boy."

Some of Jett's medications might give the family a unique experience, though.

"He is on steroids, so we're going to experience the terrible twos on steroids," Jerry laughs. "He's like a mini Incredible Hulk, or Jack-Jack from The Incredibles. It makes me miss my 6-shot lattes."

Turning serious, Jerry reflected on the family's experience.

"Life is a journey, and this has been a wonderful chapter," he says. "It has made us stronger as a family and tightened our relationships. We used to tell ourselves, 'It could always be worse,' and now we say, 'Consider it all joy.' It's our new motto, our new way to always find the positivity in life."

Allison adds encouragement for others facing similar challenges.

"Have a positive attitude," she says. "It's not as bad as you think. Jett wasn't broken. There have been bumps in the road and fears, yes, but if our family can do this, others can, too."