My Child’s Kidney Transplant Story: Hadley Frusciante
Hadley’s journey to transplant started pretty much at birth. Because she was born with a skin tag on her ear, the pediatricians recommended having an ultrasound of her kidneys to assess any potential complications. Sure enough, the scan showed Hadley’s kidneys were enlarged, so she was referred to a nephrologist. Over the next several months, Hadley had various appointments, blood work, and genetic testing, and it was eventually determined that she was positive for a WT1 gene mutation. After further genetic testing, it was determined to be a spontaneous mutation and was not in any family history.
In the few months prior to her admission to the hospital, Hadley underwent monthly blood work and regular oncology scans to monitor her kidney function and look for possible Wilms tumors, a known risk of the WT1 mutation.
Once Hadley’s condition was identified, I was made aware of the possibility that she faced cancer and/or kidney failure within her first several years of life. However, I never expected it to happen when she was just nine months old. A day before we left for Hadley’s first beach vacation she had routine blood work, and 24 hours later I received a call from the nephrologist saying that Hadley’s blood work was abnormal, and she needed to be admitted to the hospital as soon as possible.
Within a week of our admission to the first hospital, she was no longer producing urine, was placed on multiple medications, and had at least two surgeries to put in a central line to take blood and complete any necessary infusions. According to the doctors, had she not been monitored over the previous few months, had we still been at the beach, her situation would have been much worse.
After a week, we were transferred closer to home. Hadley was admitted to Maria Fareri Children’s Hospital Westchester Medical Center in late August 2023, where we stayed for the next year plus. Within days of her admission she underwent another surgery, during which a gastric tube was placed to help with medications and feeding, as well as a peritoneal dialysis catheter and hemodialysis catheter so she could start receiving dialysis treatments. With practically every surgery, Hadley had to be in the Pediatric Intensive Care Unit for multiple days.
We would have gone home about two weeks or so after starting dialysis; however, due to circumstances out of our control and Hadley developing a fistula, we were informed that we would not be able to go home until Hadley received a kidney transplant.
At that point, we worked with the doctors to determine the best course of action. She did not have the weight, height, or health she needed to be put on the transplant list until the end of February 2024.
During this time, Hadley would receive blood and iron transfusions, injections, and various other scans and procedures. In December 2023, a few days after Christmas, Hadley underwent surgery to have her kidneys removed because the doctors had found possible tumors. Unfortunately, after the procedure, there were complications with peritoneal dialysis and she was transitioned to hemodialysis treatments, which she received four days a week for five hours a day until her kidney transplant.
Hadley had various other procedures and ongoing infusions, and with time she became stronger, taller, and livelier. She was able to come off her blood pressure medication, and infusion treatments began to decrease.
Throughout all of this, my family and I began getting the word out about Hadley’s need for a kidney. We worked with the transplant team’s living donor coordinator, who helped us navigate through the NKR process and informed us how things could be streamlined. This collaboration was extremely helpful.
We were posting on social media, getting posters up, getting the news, radio, and TV stations involved, and directing potential donors to the NKR microsite. There were so many people who went to the microsite, and many filled out the information to see if they could be Hadley’s donor.
Lindsay Frusciante
We were posting on social media, getting posters up, getting the news, radio, and TV stations involved, and directing potential donors to the NKR microsite. There were so many people who went to the microsite, and many filled out the information to see if they could be Hadley’s donor. My sister wound up exploring her options to donate, and although she didn’t have the same blood type as Hadley, she was given information about the Voucher Program and eventually decided to become a donor.
Within a week of being activated on the NKR, she matched with someone who didn’t match with the majority of the country, and on July 18, she donated her kidney to a complete stranger. This gave Hadley a voucher for her kidney and within about two weeks of being activated on the NKR, she matched with a donor.
Hadley had her transplant on August 9, 2024. It was such a whirlwind of an experience. If you were to ask any of her medical team, they would tell you that Hadley does things her own way, which is a little outside the norm—they were always left guessing. She always made things interesting, and the day of her transplant proved no different. Despite a tornado warning, bad weather, and the power going out during her transplant procedure, all was successful. And on September 3, we were able to return home.
Hadley has such a sassy personality, and her personality has really flourished since the transplant and being out of the hospital. There has been no regression in her attitude. All the love and support, socialization, therapies, and overall compassion and care from the medical staff as well as my family have truly set her up for success. Since the transplant, she has continued to flourish into such a spunky little toddler who will be two years old in just a few weeks.
I’ve learned so much throughout this process, and even though I’ve been told she’ll probably need at least two more transplants in her lifetime, I’m hopeful that at some point, with advancing technology and research, she will not need as many.