We had the most wonderful experience with all of the doctors and nurses at Cooperman Barnabas Medical Center, especially Dr. Roberti, transplant surgeons Dr. Geffner and Dr. Sun, and Dr. Roberti’s wonderful nurses Josie and Nancy.
In January 2019, when Kaitlin was just 10-years-old, her family learned she inherited a rare genetic mutation from her dad, Ken Siegel, a three-time kidney transplant recipient. This mutation, in her INF2 gene, causes a peripheral nerve disease called Charcot Marie Tooth (CMT type DIE) and also the kidney disease Focal Segmental Glomerular Sclerosis (FSGS).
Between November 2019 and January 2023, Kaitlin required three reconstructive surgeries on both of her feet due to severe muscle weakness caused by the CMT. During all of this, Kaitlin’s kidney function was rapidly declining more and more with each blood test. Kaitlin’s grandfather, Leonard DiPisa, MD, a cardiologist with RWJBarnabas Health in Toms River, referred the family to Isabel Roberti, M.D., Director of Pediatric Nephrology and Transplantation, at Cooperman Barnabas Medical Center (CBMC).
Prior to what was supposed to be a small kidney checkup in June of 2023, Kaitlin and her family knew a transplant was inevitable, but thought it could most likely wait until the following winter. However, this checkup brought shocking news, as test results unveiled that Kaitlin’s kidneys were functioning only at about 10 percent.
Jennifer, Kaitlin’s mom, shared that it was at this point Dr. Roberti informed the family that Kaitlin would require a kidney transplant in the very near future or face dialysis.
Dr. Roberti explained that most times, a kidney transplant is the best treatment option for children who have end-stage kidney failure and a much better alternative than dialysis, which is both time-consuming and disruptive to a child’s social life and limits activities.
“When a child’s kidneys are not working, the whole body’s physiology changes,” explained Dr. Roberti. “The digestive system doesn’t function normally, brain development and bone growth are impaired, even taste sensation is affected. The kidney performs many functions, but dialysis can only correct a few of them. For many patients, transplant is the only good option.”
In addition to Dr. Roberti’s expertise, since Kaitlin had inherited the same genetic mutation from her dad, the family knew what was in store regarding the kidney transplant. Given all of their experience, they also were in agreement that a transplant was Kaitlin’s only option to live a full and wonderful, healthy life.
In a memoir Kaitlin wrote about her transplant experience, she wrote, “My dad is my hero, he himself has had three kidney transplants and knows exactly what to expect in the process. He reassured me and made me feel 10 times better. He always has a way of doing that. Telling me his past experiences with his transplants and how it's a lot to take on, but that I can do it.”
The Transplant Process
Although devastated by the news, the family quickly contacted The Living Donor Institute at Cooperman Barnabas Medical Center to begin the process of identifying a kidney donor. The first step was to see if Jennifer would be a match for her daughter, which she was.
Dr. Roberti explained that when choosing the transplant option for a child, most times parents are the donor to their children. But, if the parents are not blood compatible or have kidney disease themselves, then another relative can step up. A child can also be placed on the United Network for Organ Sharing (UNOS) transplant list. They may either receive an organ donation from a live or a deceased donor.
Jennifer spoke highly of her family’s experience with the CBMC staff and the process that is involved with being a donor. “Donna was my assigned donor coordinator, and we couldn’t have been luckier. She was absolutely wonderful. She explained everything to me clearly and scheduled all of my tests very quickly.”
At the same time, Kaitlin was undergoing her own set of tests. Yet as she tried to enjoy her summer and keep a positive mindset, her decreasing kidney function was starting to take a toll. “The rest of June and July was insanely rough for me. I constantly felt dizzy, nauseous and tired. It was hard to eat, but I managed and tried to enjoy myself as much as possible.”
“I became more excited than nervous. I could not wait to feel amazing from my new kidney,” said Kaitlin regarding how she felt waiting for her transplant. By August 2, Kaitlin had successfully undergone a kidney transplant performed by The Children’s Kidney Transplant Team at Cooperman Barnabas Medical Center, and walked out of the hospital just four days later. “It ended up going amazing. My mom and I had a speedy recovery. I am so grateful for her and for her giving me another chance at life.”
“As Kaitlin was discharged from the hospital with a perfect functioning kidney, some of the doctors joked that her kidney function was better than theirs,” Jennifer said. “We really owe everything to Dr Roberti. She is the most amazing doctor and we cannot thank her enough. She was in constant communication with all of Kaitlin’s nurses and she provided her, and still provides her, with the most unbelievable care. We felt so comforted to know that she had everything under control at all times.”
Life Post-Transplant
Now, about two months post-transplant, Kaitlin is back to feeling like herself as she has returned to school and is feeling amazing. She is no longer feeling nauseous, is not tired and dizzy all the time, and has all the color back in her face.
“I just feel 1,000 times better. I’m getting back to my normal life, and it’s crazy how much better I feel. Even right after the surgery, I did not have much pain after. I just felt great very quickly,” said Kaitlin. “I had a lot of anxiety around my symptoms before with how they limited me and now I can just do things without worrying and live like a 15-year-old.”
As for Jennifer and her experience donating, she said, “I would tell other people that are thinking about donating that it’s really very easy. I don’t want to downplay it, but the surgery itself isn’t bad, and the nurses and doctors at Cooperman Barnabas Medical Center are amazing, as they tell you exactly what to expect. Even recovering, I really didn’t have any pain at all, I keep telling everybody it’s almost like nothing ever happened. I have a few scars, but it’s really no big deal because what it did for Kaitlin was worth it a thousand times over.”
“We had the most wonderful experience with all of the doctors and nurses at Cooperman Barnabas Medical Center, especially Dr. Roberti, transplant surgeons Dr. Geffner and Dr. Sun, and Dr. Roberti’s wonderful nurses Josie and Nancy,” expressed the entire Siegel family.
Learn more about the Pediatric Nephrology & Kidney Transplant at Cooperman Barnabas Medical Center.