In 2019, West Virginia resident Kayla Harris was pregnant with her first child. Routine scans at around 12 weeks revealed kidney abnormalities in their developing son, Jaxson’s, kidneys.
“We knew at that point there would be something wrong [with his kidneys], but we weren’t sure whether it would be something serious.’ It was hard because when I was pregnant, there’s only so much you can tell about what the extent of the problem is, so we wouldn’t know fully what to expect until he was born,” Kayla says.
Doctors kept a close eye on Jaxson throughout Kayla’s pregnancy, and at 34 weeks, doctors realized that the amniotic fluid surrounding Jaxson had dropped. Kayla was transferred from her local hospital to another larger hospital in West Virginia, as low amniotic fluid can be a symptom of kidney failure. She underwent a number of non-stress tests before returning home. She continued visiting with a high-risk pregnancy specialist.
A few weeks later, another scan revealed that Kayla had continued to lose amniotic fluid. Jaxson was surrounded by almost no fluid. There was concern among his doctors that he would not be able to urinate when he was born. They decided to induce Kayla at 37 weeks.
Jaxson was born on July 14, 2019, to elated parents.
“Thankfully, the first thing he did after being born was pee, so that concern went away,” says Kayla.
Jaxson had numerous tests and ultrasounds done to figure out the extent of his kidney problems. Ultrasounds revealed that he had cystic renal dysplasia of both kidneys, which meant that his kidneys did not develop normally and were scarred.
Blood tests determined that his kidneys were functioning about 20% of normal. The Harrises were told that at some point Jaxson would need dialysis and a kidney transplant.
After 2 weeks in the NICU, Jaxson was cleared to go home with his family.
“During that time, he was on lots of different formulas to monitor his electrolytes and he also had to be on a low-potassium diet. I honestly feel like the first couple months of his life were a blur,” says Kayla. “From him being in the NICU and then we were in and out of the hospital a lot for the first two months of his life, changing medicines and formulas, from doctor to doctor and hospital to hospital, trying to figure out where he needed to be to get him the best care. They officially diagnosed him with PKD. It was all very overwhelming and scary.”
At one point, a few days after switching Jaxson’s formula once again, bloodwork showed that his potassium levels were double the normal range. That high of potassium can lead to cardiac arrest, so Jaxson was immediately taken to the nearest emergency department (ED).
At that ED, after getting an IV started to work on lowering his potassium levels, doctors decided that Jaxson should be transferred to a hospital that had more expertise in managing his condition.
“We were given the choice of a few different hospitals where Jaxson could be taken – UPMC Children’s was one of them. Because we knew that a transplant was likely in Jaxson’s future, that made our decision to go to Pittsburgh easier.”
Heading to Pittsburgh
Kayla was referring to the Hillman Center for Pediatric Transplantation at UPMC Children’s Hospital of Pittsburgh, which has been the nation's leading children's transplant hospital for more than 30 years. UPMC Children's transplant teams have performed over 600 pediatric kidney transplants, making UPMC Children's one of the most active pediatric kidney transplant centers in the world.
So at just 2 months old, Jaxson was transported via helicopter to UPMC Children’s. Jaxson’s grandmother flew with him, while Jaxson’s parents made the 3 hour drive to meet them in Pittsburgh. Thankfully, during the transport, the transport team got Jaxson’s potassium levels down a bit, and he was admitted to Children’s Pediatric Intensive Care Unit (PICU) when he arrived.
They stayed at Children’s for three and half weeks, during which time Jaxson was under the care of several pediatric nephrologists including Dana Fuhrman, DO, and Michael Moritz, MD.
“We immediately fell in love with everybody [at Children’s],” said Kayla. “They did everything they could to make it a pleasant experience for us, always asking us if there was anything they could do to help us be more comfortable. Everyone we interacted with was absolutely phenomenal.”
While at Children’s, the Harrises got second opinions on Jaxson’s case and his condition. They decided that it would be in Jaxson’s best interest to establish his care going forward at Children’s.
At Children’s they also were able to delay starting Jaxson on dialysis until he was a year and a half old.
Finding a Donor Close to Home
Jaxson began at-home dialysis in February 2021. Weighing less than 20 pounds, he was still too small to receive a kidney transplant. But with his kidneys failing, it was time to begin searching for a donor for a transplant.
In March, Kayla underwent two days of testing to determine whether she could be a match for Jaxson and she was a match for her son.
She says she never hesitated that she would go through with the donation.
“It was scary, don’t get me wrong. But to be able to do that for your son…absolutely I would I do it,” said Kayla.
The transplant was set for September 23, 2021, after Jaxson was 20 pounds.
On that day, 2-year-old Jaxson and 32-year-old mom, Kayla, underwent surgery at the same time.
One of Kayla’s kidneys was removed by Amit Tevar, MD, at UPMC Montefiore around 8 a.m. and placed in Jaxson by Armando Ganoza, MD at UPMC Children’s just a few hours later.
After coming out of her own surgery, Kayla was eager to hear how Jaxson’s surgery had gone. Her mother-in-law, who had been Jaxson’s caretaker in the hospital while Kayla’s husband stayed with her for her own surgery, told her his surgery had also gone well and the transplant was successful.
Kayla was discharged the very next day and says that she didn’t feel any different.
“I wasn’t able to lift anything for about six weeks, and it was just normal healing after a surgery like that, but otherwise, I felt good,” said Kayla.
As for Jaxson, he recovered at Children’s for eight days before he was discharged.
The Harrises stayed in Pittsburgh for about a month after the transplant so that they could both have easy access to follow-up appointments.
Back Home and Better Than Normal
Once they returned home, Kayla says they began seeing all sorts of positive differences in Jaxson just a few months after the transplant.
“We were told that after the transplant, his energy level would go through the roof. Boy was that true. And I thought he had energy before the transplant,” said Kayla.
Jaxson had growth and developmental delays due to his kidney failure. Prior to the transplant, he had been in physical, occupational, and speech therapy. Afterwards, he made such significant gains in speech therapy that there are now almost no concerns.
Now a year and a half out from the transplant, “he’s taller, he’s gained so much weight,” says Kayla. “It’s so interesting to see how much your kidney function affects your whole body and development.”
Prior to his transplant, his dialysis port didn’t allow him to do things like get in the tub or even lay on his stomach. Kayla says that last year was a big year for Jaxson because he was finally able to experience getting in a pool and swimming.
Jaxson went from taking eight medicines prior to transplant, to now only three. He still has to get bloodwork done every month and visit Children’s every three months to keep an eye on things.
“We can’t thank our entire transplant team enough for being Jaxson’s lifesavers. To all of the kidney doctors and surgeons we worked with – Dr. Moritz, Dr. [Melissa] Anslow, Dr. Ganoza –the transplant coordinator, our social worker…thank you! As overwhelming as it could all be, it was worth it in the end. To see the difference in a child before and after is just amazing.”
With the transplant behind him, Jaxson has returned to life as a healthy, almost-4-year-old boy. He loves being outside and “anything with wheels” and will be starting at Head Start this coming fall.
“He’s an all-around active kid,” says Kayla. “He was in the Civic Center’s basketball league. Last year, he got approved for a Make-A-Wish and we bought a big swing set for the house that he absolutely loves. It’s truly hard to keep him down!”