Family first: Nolan and Uncle Jon’s living donor kidney transplant

Nolan and his uncle Jon are both tall and blonde, but they now have something more in common: The two have an unbreakable bond, thanks to a selfless —and lucky — gift that changed Nolan’s life forever.

The first year after Nolan was born, his primary care physician ran some blood work to try to explain Nolan’s slow weight gain, or “failure to thrive,” which can interfere with brain development and other developmental issues. Nolan’s mother remembers that, “Nolan’s pediatrician told us to get him to Boston Children’s Hospital immediately because his lab tests were concerning. We had no idea what that meant, but we knew Boston Children’s was where we’d find out.”

Unexpected answers

After Nolan was admitted to Boston Children’s, Dr. Michelle Baum, from the Division of Nephrology, ran more tests and confirmed that there was something wrong with Nolan’s kidneys. “That first year was really a whirlwind,” remembers Melissa. “There were lots of tests, ultrasounds, blood work — really everything and anything to try to figure out exactly what was going on.”  The results pointed to end-stage renal disease (ESRD), also known as kidney failure. “We were told that both of Nolan’s kidneys never fully developed,” shares Melissa. “To this day, we’re not sure why.”

At the time of his diagnosis, Nolan’s kidneys were functioning at about 30 percent, compared to a normal kidney. “The team took the time to explain everything to us in terms of how long his kidneys would continue functioning until he needed a transplant or dialysis,” says Melissa. 

Nolan’s care was transitioned to the ESRD team to prepare him for eventual kidney transplant.  It was there that he met his renal transplant coordinator, nurse practitioner JoAnn Morey. The family learned that Nolan would likely need a kidney transplant sometime in the next few years.  He would need to undergo regular blood tests and appointments with his multidisciplinary team, including transplant nephrologists, nurse practitioners, nurses, renal social workers, renal dieticians, and a transplant pharmacist. 

The team hoped to plan a pre-emptive kidney transplant, meaning Nolan wouldn’t require dialysis prior to his transplant. “It was a really good plan, because we knew we always had something to look forward to for his health,” says Melissa.

Uncle Jon saves the day

“The Kidney Transplant Program helped us prepare,” shares Melissa. “It became less about maintaining the kidneys that Nolan was born with, and more about focusing on getting Nolan a new kidney.” Several years later, when Nolan was 8 years old, his lab work and clinical exam indicated that Nolan was ready for his kidney transplant.

“The team had us create a list of potential living donors and get them tested to see if they were a match for Nolan,” shares Melissa. “The first match was my husband.” Just as they were moving forward with having Melissa’s husband, Rob, be the living donor, they learned that one of the vessels in his kidney wasn’t going to be a good fit for Nolan’s body.  

Fortunately, Melissa’s younger brother, Nolan’s uncle Jon, volunteered to be tested as a potential kidney donor for Nolan. “It was the easiest decision I’ve ever made,” says Jon. “As soon as I got the results back that Nolan and I were a match, it was a no-brainer to go for it.”

A true family gift

With Nolan at Boston Children’s and Jon at nearby Brigham and Women’s Hospital, both surgeries were a success. “The Brigham team was able to transport the kidney across the bridge to Boston Children’s, and all the testing that was required for Jon was coordinated perfectly— it was incredible,” shares Melissa. Jon was surprised at how well he felt after donating his kidney. “I was a little bloated after surgery, but aside from that I felt fine,” he says. Nolan had a few expected “hiccups” over his first year post-transplant but has overall done very well.

Now 12, Nolan is thriving with normal kidney function, thanks to his Uncle Jon. “We just celebrated his five-year transplant anniversary in July,” smiles Melissa. “Since the day after he woke up from his surgery, he looked stronger and his appetite was bigger. He was completely changed from this organ transplant, and we can’t thank Jon enough.” Now, Nolan is playing baseball with his All-Star team, and Uncle Jon is cheering him on in the stands.  

For any families who are considering a living donor for their child, Melissa, Nolan, and Jon all agree that it is worth it. 

To learn more, visit the Pediatric Transplant Center. To become an organ donor, register here.