Insley Santifort was born in November of 2020 with no kidney function; from the beginning of her life, she had to be on dialysis. After an unsuccessful initial kidney transplant at another institution, Insley transferred to ECU Health to receive a second kidney transplant in 2024. With the help of her family, her kidney donors, her surgeons and the entire ECU Health transplant team, Insley is now able to do some things she and her family weren’t sure would ever be possible.
In need of a kidney
After Insley’s traumatic birth, wherein she suffered from hypoxic ischemic encephalopathy (HIE) and catastrophic blood loss to her kidneys, she was moved to Maynard Children’s Hospital to receive the best care possible. That’s where she and her family met Dr. Liliana Gomez Mendez, a pediatric nephrologist. “I met Insley shortly after she was born, which was a traumatic birth,” Dr. Gomez Mendez said. “She was transferred to ECU Health, and we knew her kidneys weren’t working, so she started dialysis the first week of her life. When she came to the NICU, no one knew what would happen.” Insley was able to leave the NICU after 55 days, but her status was still tenuous. Dr. Gomez Mendez decided to refer Insley to the organ transplant team.
That team included Dr. David Leeser, the chief of Kidney and Pancreas Transplantation, and Dr. Margaret Romine, who specializes in transplant surgery and serves as the director of the Living Donor Program. “We worked her up and planned for a living donor,” Dr. Leeser said, “But because of reasons beyond their control, the family had to go to another North Carolina transplant center.” Insley’s family put out a call to their friends and family to secure a kidney for their daughter when Insley’s immediate family members weren’t a match. “I was of course tested but was denied based on some findings,” Kayla Santifort, Insley’s mom, said. “My husband wasn’t a match because of blood type, so at that point we had to turn to our community for help.”
Incredibly, they were able to find a donor, and Insley had her first kidney transplant in July 2023. The transplant, however, was not successful. “Her transplant thrombosed within the first 48 hours of surgery,” Dr. Leeser explained. “There are of course risks for this type of surgery,” Dr. Gomez Mendez added. “And so Insley ended up in critical condition.” Insley pulled through, and the kidney regained some function, but it became clear that she was going to need another kidney, and soon. “That’s when Insley’s family came back to ECU Health,” Dr. Gomez Mendez said. “Before we were even discharged from the other hospital, I reached out to Dr. Gomez Mendez and told her we wanted to transfer back to ECU Health,” Kayla said. “Because Insley was a fresh transplant and the kidney was technically working enough to keep her off dialysis, Dr. Gomez Mendez had to get the okay from Dr. Leeser and his team to accept us back.” Dr. Leeser said they would take Insley’s case, although it was anything but uncomplicated. “Insley’s case was not standard, and I think that her case is a true testament to the potential of our program,” Dr. Romine said.
Kayla and Insley’s family found themselves in the same predicament as before: they needed a new kidney and a new donor. “How do you ask someone to put their life on hold and take a part of themselves to give to your daughter to save her life?” Kayla said. Yet, Insley’s family and the transplant team were amazed when more than 100 people came forward to be tested as potential donors. “That’s the most the transplant team ever had,” Kayla said. “We had people from Wayne County, Duplin County and even out of state get tested. It shows how close our communities are.” There were so many volunteers, it took some time to parse through the list. “It’s a huge process of evaluating potential donors, and we were fortunate to have a good donor from that list,” said Dr. Romine.
A new donor
That donor was Jenny Godwin, a former ECU Health team member who worked in the transplant operating room (OR). She also happened to know Kayla from when they worked together at UNC Health Wayne in the emergency department (ED). “We’ve known each other for years,” Kayla said. “Did I think 10 years ago Jenny would be the one to donate her kidney to save my daughter’s life? No. Now I couldn’t imagine life without her and her family.”
When Jenny learned Insley needed a second kidney, something told her to get tested. Kayla, too, had a similar premonition. “I knew they were looking for a small female donor, and I just had this feeling about Jenny,” Kayla said. “I remember I was sitting in my truck when Jenny FaceTimed me to tell me she was a match. There are days now that I cry to know someone like Jenny with kids and a husband was willing to save my child’s life.” Jenny said her experience in the transplant OR helped her feel at peace about the decision to donate. “When I was on the transplant team, I assisted with living donors and witnessed transplants in the OR. After I found out I was a match, I met with the transplant team to discuss my surgery and it was amazing. It felt right.”
“You’d be surprised at how many people decide to donate a kidney,” Dr. Leeser said of Jenny’s generosity. “It takes folks who are committed to making an impact on the world and the greater good in a way that is utterly selfless and remarkable.” Dr. Leeser noted that although it’s very safe to be a living donor, more than 100,000 people are on a waitlist for a new kidney. “If only .03% of the U.S. population donated a kidney, we would wipe out that waitlist in a year,” he said.
The team scheduled Insley’s surgery for several months out, in the hopes that she would heal from her first transplant while avoiding putting her back on dialysis. Finally, in February 2024, Jenny donated her kidney and Insley underwent her second kidney transplant in less than a year. Dr. Matthew Black, the newest partner on the transplant team, worked with Dr. Leeser to prepare Insley for the implant. “The surgery was complex enough to require two attending level surgeons,” Dr. Leeser said. Dr. Leeser acknowledged that it was a challenging surgery, and not just because Insley was a small child. “There was scar tissue, and of course we had to remove the first kidney to put in the new one,” he said. “In a child that size, you worry about blood loss. Everything in a child is fragile, but everything went exceedingly well.” Dr. Gomez Mendez was also pleased with the surgery outcomes: “The kidney began working immediately, and she had no complications.”
A team like no other
Kayla attributes her daughter’s successful outcomes to the transplant team, Dr. Gomez Mendez, the pediatric intensive care unit (PICU) and Insley’s entire ECU Health team. “They are all just phenomenal,” she said. “They were very up front and honest that this was going to be a difficult and lengthy surgery, but after hearing their plans, I knew we were in the best hands. If anyone could explant and transplant her, it was this team.” Jenny felt the same way: “Not all teams get along and you can feel that. This one makes you feel like it’s a family and they’re on the same page, and that shows. The morning of my surgery I felt at ease and peace.”
Dr. Leeser also had a lot to say about the knowledge, skill and teamwork of the ECU Health transplant team: “Dr. Romine runs the donor side of things, and she’s helped to grow our program over the last six to seven years, so we’ve gone from doing around 80 surgeries a year to between 130 and 160 a year. And Dr. Gomez Mendez came to us from the University of California San Francisco, one of the best hospital systems in the world for transplants. She’s exceedingly intelligent and understands the psyche of surgeons. She is as big of a reason Insley’s family wanted to be at ECU Health as anyone else.”
Together, Dr. Leeser said this team is always focused on taking care of the patients and will work through any issues. “You want physicians who push and test each other. Our team has great discussions. Sometimes we laugh, sometimes things are tense, but at the end of the day, we’re all in it together.” That involves everyone, he said, including administrators, surgical coordinators, social workers, nutritionists, nurses, pharmacists and countless others. “This work takes a tremendous amount of support. In the intensive care unit (ICU) we meet with nurses and managers on a regular basis, and we’ve developed strong relationships with our PICU colleagues. We have learned how to work together to bring the most of what each of us can to the patients.”
Dr. Romine agreed, citing the unique nature of their team. “We’re doing what bigger systems are doing with less resources. That’s only possible with a team that buys into the goal,” she said. These services are especially important, as they provide vital services to a region in need. “One of the things I’m proud of is that there’s such a need medically and a lot of patients who otherwise would have to go to elsewhere don’t have to. I love that our program is allowing access to care that wouldn’t otherwise be there.”
The result of this teamwork is positive patient outcomes, including those for Insley. “She went home after five days in the hospital and she’s done superbly well,” Dr. Leeser said. “When you have renal failure, you don’t feel well and things don’t taste good, so Insley wasn’t eating much before the surgery. Insley is now able to enjoy some foods.” Kayla also sees the change in Insley’s quality of life. “If you look at Insley and know her story, you know how much she and our family have suffered. She couldn’t go swimming or go to the beach, or even take an actual bath when she was on dialysis. We’re going to the beach this weekend to celebrate Jenny and her family.” It’s those little things Kayla said people take for granted but are so special now.
A gift that saves lives
Those little things wouldn’t be possible without generous donors like Jenny, as well as Insley’s first kidney donor, and the National Kidney Registry. “I want to raise awareness about organ donation, and not just after someone passes away,” Kayla said. “Living donation allows you to give a part of yourself while you’re still alive to save someone else. As a nurse and the mom of a transplant patient, the importance of organ donation has never been more real.” Jenny, too, was eager to speak about her experience so others can consider doing what she did. “If anyone is on the fence, I am happy to talk with them. It’s important we have living donors.” Dr. Leeser emphasized that the National Kidney Registry is a great place for potential donors to explore their options. “Someone might want to donate to their family member, so we put the donor in the registry. Even if they don’t match with their intended person, they can still donate their kidney to someone who needs it, and their intended recipient receives a voucher so they receive a kidney from a well-matched donor on the registry.” Dr. Gomez Mendez also wanted people to know that kidneys donated from living donors perform better than those from deceased donors. “The only way for Insley to have the best outcomes was from a live donor,” she said. “A live kidney will last more than a deceased donation.” The National Kidney Registry’s website reports that the average length of time a kidney from a deceased donor lasts is 10-15 years, while it’s closer to 20-40 years when it’s from a living donor.
Because of Jenny’s gift of a kidney, and because of the hard work of Dr. Leeser, Dr. Romine, Dr. Gomez Mendez and the many others on the transplant team, Insley now has a chance at a normal life. “I’m so happy we are at a point where Insley has a fully functioning kidney. It was a long battle, and I’m happy to see her thriving and being a little kid,” said Dr. Gomez Mendez. Kayla attributes Insley’s success to the care she received from ECU Health. “I’d recommend ECU Health and the children’s hospital to anyone,” she said. “To watch her go from an unhealthy quality of life to growing and thriving – that reward is more than anyone could ask for.” Dr. Leeser is quick to share the credit for Insley’s and other patients’ success with the program and team, which they’ve worked to build over the last seven years. “I’m very proud of the program,” he said. “I would argue we’re the best program for kidney transplant in the state, and we’re on the precipice of doing even more.”
If you are interested in learning more about how to donate a kidney, you may visit https://www.kidneyregistry.org/, or if you’d like to learn more about ECU Health’s transplant services, visit here.