Ever since she was a little girl, all Hannah Nellis wanted to do was to go to school. Not a typical dream for a 10 year-old, but then again, Hannah’s anything but average.
Born with a series of complex medical conditions compromising her kidneys and other organs, Hannah spent her first nine years in and out of doctor’s offices, undergoing tests, dialysis and other treatments. It’s a grueling schedule, often leaving her too busy and tired to attend school. To keep her functioning at the same level as her peers, Hannah’s mother Jennifer home schooled in between doctor visits and treatments.
After years of managing Hannah’s condition, doctors near her hometown of Gloversville, NY, decided a kidney transplant would be the young girl’s best chance at living a full, healthy life. Given Hannah’s age and the complexity of her condition, her local medical team referred her to the Boston Children’s Hospital Renal Transplant Program.
Hearing that her daughter’s care was going to be transferred to a new group of specialists in Boston was bittersweet for Jennifer; on one hand she was glad her daughter was going to be seen by pediatric specialists, but she was also nervous about being so far from home during such a stressful time.
“Boston is a four hour drive for us,” she says. “That’s a lot of traveling for anyone, but it’s especially far when you’re worried about your child.”
But after a few minutes with Courtney Loper, MSN, RN, CPNP, Nurse Practitioner and Renal Transplant Coordinator for the Renal Transplant Program, Jennifer says she felt at home in Boston. “Courtney and the whole team was so great from the minute we got here,” she says. “They made a stressful situation so much easier to deal with.”
For the next year and a half Jennifer and Hannah made routine trips to Boston from Gloversville so Hannah could be evaluated and get dialysis. At the same time both mother and daughter received transplant education and consultation to make sure everything would go smoothly after transplant. By August 2012 Hannah and Jennifer were ready, and Hannah was actively listed for a Deceased Donor Kidney Transplant with the New England Organ Bank.
Everyone was prepared for a difficult wait—on average, in this region, it takes about 3 months for a child to receive a donor kidney—but barely two weeks after being added to the list, Jennifer received the call that her daughter’s new kidney was waiting in Boston.
“I was in shock,” Jennifer remembers. “I thought finding an organ would take at least three months. We got the call so fast my head was spinning.”
“Mom was running all around the house, when they said I could go to Boston for my operation,” adds Hannah with a knowing smile. “I was a little scared, but not as bad as her. I was ready.”
Within hours Hannah was being prepared for her transplant. 10 hours later she emerged from the surgical suite with a new, functioning kidney. Hannah was discharged to local housing after about two weeks, and then in early September, less than a month after being placed on the waiting list, Hannah went home to Albany, where her care will be split between Boston Children’s and her team at Albany Medical Center
Boston Children’s Renal Transplant Program prides itself on securing its patients shorter than average times on the transplant waiting list. (Boston Children’s patients often receive their transplant three to six months sooner than the national average for children.) The program’s list-to-transplant speed is one of the reasons the Department of Health and Human Services recently honored the program with a Silver Level Award.
“It’s important because children fare better when they have a working kidney than when they are on dialysis,” says Loper. “Kids often experience real spikes in growth and development after a kidney transplant, so we work hard to make it happen as soon as possible.”
Today Hannah and her new kidney are doing great. She’s on a special medication protocol, designed by William Harmon, MD, Boston Children’s chief of Nephrology, which means she has to take far less anti-rejection meds than most transplant patients. Jennifer says her daughter has twice the energy she had before the operation, and is growing at a fantastic rate. (Renal failure often stunts children’s growth; when the child receives a new kidney they often experience a growth spurt.)
“Kids often experience real spikes in growth and development after a kidney transplant, so we work hard to make it happen as soon as possible.” –Courtney Loper, Renal Transplant Coordinator
Hannah’s quick to point out how much she’s grown, she’s always been a little self-conscious of being shorter than most kids, but more than anything she’s proud to finally be in school. Just last week Hannah joined Mrs. Wilson’s third grade class in Gloversville, surrounded by kids her own age, and as she puts it, “doing the same things as everyone else.”
When not in school, Jennifer and Hannah still make the drive to Boston twice a week for blood work and check-ups. Given how well she’s recovering the follow-up care could be provided at a local hospital, but Jennifer says the connection she and her daughter have with the team at Boston Children’s Renal Transplant Program is too important to give up just yet.
“The drive can be a little tiresome, especially now that Hannah’s going to be a full-time student, but it’s so worth it.” Jennifer says. “She received her kidney here, the team knows her and love her and we want that relationship to continue.”