Some transplanted organs can last for life. The kidney isn't one of them. Charley and her family have known that ever since she was 2, when a donated kidney saved her life.
"The new kidney basically starts decreasing in function the minute they put it in," Charley's grandmother Rachelle explains.
Another challenge Charley's family has accepted as a lifelong reality: It will become harder to find a donor match with future transplants. That's because with every transplant, Charley's immune system produces antibodies that try to fight off the transplanted kidney, which her body mistakes as an invader.
"That's why she lives on immunosuppression drugs, so her body doesn't wake up and say 'Hey, that doesn't belong to you!'" Rachelle said.
Charley was born with one healthy kidney, and it took a few months for tests to reveal that her other kidney was not developing. After a year of close monitoring and no improvement, doctors determined that one of her kidneys was not functioning at all. She would have to get it removed and go on dialysis while waiting for a kidney transplant. But during the surgery at a Louisiana hospital, Charley wound up losing both kidneys.
That night she was rushed to the Pediatric Nephrology Department at Children's Health℠ in Dallas, where she began dialysis treatment six days a week, with a multidisciplinary team of nephrologists, cardiologists, surgeons, nurses, child life specialists, play therapists, and others collaborating on the 15-month-old's care around the clock.
Charley’s care team treated her like she was one of their own. They’ve gotten to watch her grow up. They pull for kids so hard.
"Charley's care team treated her like she was one of their own," Rachelle said. "They've gotten to watch her grow up. They pull for kids so hard."
Now 13, Charley is thriving all over again with her second new kidney — transplanted two days before Christmas 2022, by the same surgeon who performed her first transplant, Dev Desai, M.D., Ph.D., Head of Pediatric Abdominal Transplantation at Children's Health and Professor at UT Southwestern.
Organ donation saves Charley's life twice
Charley's first transplanted kidney lasted her more than 10 years. By the time she had to get it removed, her kidney function had declined so much, she lingered in a state of nearly constant pain. "I couldn't even walk," Charley said. "It hurt to stand up."
For nearly a year and a half, Charley had to undergo daily peritoneal dialysis at home, a treatment that uses the lining of the abdomen to filter blood through the body. She had surgery to remove the kidney in September 2022, then spent the next several months going to Children's Health almost every day for four hours of hemodialysis, a treatment that filters the blood through a machine that acts like an artificial kidney.
It was a trying time, but day after day, Charley's medical team worked non-stop to provide her the highest quality of care. They circled around her and sang as she got dialysis on her 13th birthday. Raymond Quigley, M.D., her dialysis doctor, paid Charley a special visit around Christmas to play carols on his violin.
"Children's Health doesn't just treat the physical issue," Rachelle said. "They treat the mind, body, soul, emotional health, mental health. … They have a specialty for everything. And it really, really makes a difference."
Both transplanted kidneys came from living donors with connections to the family's church: the first, Jessica, a high school friend and cheer teammate of Charley's mom; the second, Rebecca, a woman who had moved from Texas to Nebraska.
Rebecca agreed to go through the organ donor screening process after learning that she and Charley had the same blood type. "I talked to my husband and we agreed there was no harm in starting the process," said Rebecca, a mother of four.
After a series of surveys and blood tests, Rebecca flew to Dallas for a more in-depth health screening, including interviews with a social worker and psychologist, and other tests to rule out any possible issue that might get in the way of a successful transplant.
Rebecca spent a week with Charley and her family as they got one last step closer to an official greenlight. She cherishes that time, as well as the memory of the life-changing moment when they found out the transplant was a go.
If you didn't know Charley, you wouldn't have known the weight she was carrying. I will never forget the look of relief on her face. Her smile was the most beautiful thing to me.
"If you didn't know Charley, you wouldn't have known the weight she was carrying," Rebecca said. "I will never forget the look of relief on her face. … Her smile was the most beautiful thing to me."
Charley's second transplant and Rebecca's surgery both went beautifully. The same goes for their recovery. Charley is happy to have more energy, more time to ride her horse Dooley, to swim, and to sleep over at friends' houses — something she hadn't been able to do for a long time because of her treatment.
"It's been wonderful to be part of that journey with Charley and her family," Dr. Desai said, "and to be able to provide her that childhood that, far too often, illness can take away."
The ultimate gift
The extensive screening process living organ donors go through ensures they're healthy enough to give away an organ, and that the organ they're giving away is healthy enough for the recipient. That's one of the reasons organs from living donors last longer than those from deceased donors.
Charley and her family are staying in close touch with Rebecca, just as they've done with Jessica for many years -- their extended family now. They share a deep sense of gratitude for one another and hope their story inspires others to join the National Donate Life Living Donor Registry.
"I firmly believe that God gave you a pair so you can share," Rachelle said. "One kidney for you and one to share."
Charley will need another transplant someday, which is and isn't a big deal to a girl who has spent her whole life showing up for each new challenge with courage, resilience, and gratitude — qualities that inspire everyone on her medical team.
More than 100,000 people are waiting for life-saving organ transplants. Thousands die every year on waiting lists for transplants. Learn more about organ donation and register as a donor through Donate Life America.
The Pediatric Transplant Program at Children's Health is one of the longest-running, most experienced pediatric multi-organ transplant programs in the nation, and the only program in Texas that has performed more than 1,000 abdominal transplants.