Supportive community, a stranger and highly ranked nephrology team help little girl with big kidney trouble

Haven McCutcheon, almost 2 years old, has been through more hardships than most adults. Haven’s medical journey started in June of 2023 when she was diagnosed with a rare type of nephrotic syndrome after her mother noticed her body swelling. Kasey Hardy knew right away that Haven would need a kidney transplant, which started their yearlong journey at the MUSC Shawn Jenkins Children’s Hospital. This nephrotic syndrome was the same condition that Haven's older sister, Addy, died from in 2017. Addy now would have been 13 years old.

Thanks to Hardy's employer, L&B Developers, and JABS Fireworks, a total of nine billboards were put up around Florence and Charleston seeking a donor.

“The billboards were supposed to bring awareness and potentially get a kidney donor for Haven because time was of the essence. It was the best way and quickest way to get it out there. It also brought awareness to people that you can have a live donor,” said L & B Developers' Lindsey Knight. 

 

After 11 months of searching and waiting, Haven finally received her kidney transplant on Aug. 16 from a random donor through the donor exchange program. 

“It was a long process. She was a hard match. She had a lot of antibodies,” said Hardy. “So we actually went through the process of doing the exchange donor program through the living donor system in order to swap matches with people.”

Haven's high antibody levels made it difficult for family members or friends to be a match. So Haven and her donor were placed in a donor exchange program. Another recipient in the country had a similar situation – a donor who did not match to her but did match Haven, while Haven’s donor matched the other recipient. Through the exchange, they swapped donors, allowing Haven to receive the kidney she needed. 

“It's been a lot. It's been a long road. We've had a couple of moments, but this is just something that we were so excited to see because we knew that we had a donor,” said Hardy. “So it's really, really good.”

 

Katherine Twombley, M.D., has been treating Haven from the start and also cared for her sister Addy. Twombley noted that a transplant like Haven’s is rare, explaining that they only see transplant cases for kids under the age of 2 about once every five years. So ensuring that Haven received the kidney she needed was a team effort. 

“It was kind of reinventing the wheel to get everything in place so that it would run smoothly because, with small kids, there's just very little room for error,” said Twombley. “It took a lot of coordination and a lot of planning. It was very involved.”

Although Haven is now feeling better, her healing process after surgery didn’t come without challenges. Luckily, with the help of the pediatric nephrology team, her complications resolved. 

“She developed massive ascites, or fluid buildup in her belly, after the surgery and had to have it drained twice. I've never seen ascites as significant as hers after the transplant, but, fortunately, it resolved as fast as it showed up,” said Twombley. 

Haven’s story is just one example of the great work the Pediatric Nephrology team at MUSC Shawn Jenkins Children’s Hospital is doing. It comes just before U.S. News & World Report announced that it ranks No. 24 in Nephrology across the country, moving up 24 spots from last year’s rankings. 

“I think it's going to change how others see us. I think other places and families throughout the state are going to see that MUSC really is a top-rated nephrology program,” said Twombley. “I'm hoping it'll increase our referral population when people see that we are highly ranked. We always strive to provide the best care. I'm hoping others will now see all that effort and the quality that we provide our patients.” 

Despite everything the family has been through, Hardy said the SJCH team has made a profound impact on both her and Haven. The staff hasn’t just cared for Haven – they’ve all formed a close bond with the family.

“We've been in the hospital for one year. Just living here, waiting for her and not risking any infections,” said Hardy. “Just having that opportunity of getting to watch her grow, with the nurses, and they've been very supportive over here. It's like a second family to us for sure.”

To Hardy, the nephrology team at MUSC Shawn Jenkins Children’s Hospital has given Haven a second chance at life. For the first time in a long time, Haven's family has hope for a bright future. 

“Just to see her make the memories and grow into the little girl that we can't wait to see,” said Hardy. “She's our little angel, for sure. She's definitely a strong little girl.”

MUSC Health is actively seeking living kidney donors throughout the state to save the lives of patients of all ages. Learn more on MUSC Health's Living Kidney Donation page.