“Are you ready for this?” Tiffanie Reeves asked her husband Jack.
It’s 3 a.m. in the morning on Feb. 10, 2018. Tiffanie and Jack are roughly 1,200 miles apart: She is at University of Minnesota Masonic Children’s Hospital, sitting opposite Transplant Surgeon Raja Kandaswamy, MD. Jack is back home, in South Carolina. Tiffanie and Kandaswamy lean over a phone.
“Jack, I think we are going to go ahead. The organ looks good,” said Kandaswamy, who is also a University of Minnesota Medical School faculty member.
With those words, a 210-day wait came to an end. That’s how long Tiffanie and Jack’s daughter, Emmy, had been on the transplant list, waiting for a donor pancreas to become available. The moment was incredibly powerful for 12-year-old Emmy and her parents, but it’s also momentous in another way: Emmy became the youngest person in the United States to undergo a pediatric pancreas transplant of this kind in nearly 25 years.
After Emmy’s first insulin injection, however, she experienced an unusual and intense reaction that included difficulty breathing and a rash. The more Emmy’s diabetes progressed, the more she needed insulin, and the worse her reactions got. After testing, doctors discovered that Emmy had a rare allergy to the insulin medication delivered by the injections—though she was not allergic to naturally produced insulin.
“Every time I give her shot she describes it as a burning sensation that spreads from that spot throughout her whole body,” Tiffanie said. “It can last 30 minutes or longer—every single time.”
“The medication we have to use to treat this disease is insulin. She needs insulin, literally, to stay alive,” said University of Minnesota Health Pediatric Endocrinologist Melena Bellin, MD. Like Kandaswamy, Bellin is a University of Minnesota Medical School faculty member.
For a time, Emmy’s doctors in South Carolina were able to control the allergic reactions with antihistamines and pain medication. Eventually, however, Emmy’s parents and care providers learned that her allergy was causing internal damage in addition to her rashes and breathing difficulty.
Emmy’s complications grew worse. Her eyesight was affected by high doses of the anti-inflammatory medication she took to manage her allergies, and her nerves were damaged by her type 1 diabetes. The amount of antihistamines and pain medication she required also took a toll on her quality of life. The secondary complications threatened Emmy’s longevity.
“Our doctors back home didn’t know what to do,” said Tiffanie.
That’s when they reached to Kandaswamy.
“I remember it like was yesterday,” Kandaswamy said, “I got an email from Jack, Emmy’s dad, explaining his daughter’s medical condition. He asked if there was anything we could do from a transplant standpoint.”
The Reeves knew a pancreas transplant was not a “cure-all” for Emmy. A new and healthy pancreas would enable her to start producing natural insulin—effectively ending Emmy’s diabetes—but the procedure came with its own risks and side effects.
Emmy’s medical condition is extremely rare, and the family was out of options. Kandaswamy and other University of Minnesota Health experts agreed a whole-pancreas transplant offered Emmy the best chance.
“Only a handful of people in the world have been found to have these types of reactions. As a medical professional, you look for other alternatives short of a pancreas transplant, but this is a particularly difficult condition to treat,” said Bellin.
Pancreas transplants are more common among adult patients, but in children the procedure is extremely rare. Emmy’s procedure would be the first of its kind at any hospital nationwide in nearly two decades.
Fortunately, Emmy had an experienced, comprehensive team by her side. That team included surgeons, anesthesiologists, nephrologists, allergists, endocrinologists, transplant coordinators, social workers, dietitians, pain management experts and integrative health specialists.
“We take care of medically complex children before, during and after their procedure using a coordinated team approach, and that’s pretty special,” said Pediatrician Lynn Gershan, MD, an integrative health expert and University of Minnesota Medical School faculty member. Gershan helped treat Emmy.
“You can take away the source of the pain, but her nerves and her body and her brain still remember. We needed to work through the discomfort, and equip her with ways to cope,” said Nurse Practitioner Molly Hagen, DNP, APRN, a member of the University of Minnesota Health Pediatric Pain Management Program.
In July 2017, Emmy was placed on the transplant list. She and her mom moved to the Ronald McDonald House in Minneapolis so they could be closer to University of Minnesota Masonic Children’s Hospital, for treatment. Jack stayed behind in South Carolina to care for Emmy’s younger sister.
As summer turned to fall and fall turned to winter, the promise of “what could be” kept the family positive.
“I just want to see what she becomes,” Jack said. “She will no longer be chained to needing insulin or have to worry too much about her blood sugar. I can’t wait to see what she becomes.”
Tiffanie got the call on Feb. 9, 2018: A donor pancreas had become available. At the time, Emmy, who loves animals, was watching a documentary about wolves. After the movie finished Tiffanie and Emmy tore through Ronald McDonald House with renewed energy and hope.
“Everyone there was like: ‘Is it time?!’ It was like somebody really important came to visit, everyone was so excited,” Tiffanie said. At 2 a.m. on Feb. 10, they arrived at the children’s hospital. They were met by Kandaswamy, who would be performing the surgery.
The surgery lasted four hours and was a success.
After the surgery, Emmy’s healthy pancreas took over and began producing insulin for her body. Emmy, currently 13 years old, is now insulin independent, which means she no longer needs insulin injections—or the medication to counter the allergic reactions she experienced after each injection.
Emmy’s energy level is noticeably different. She can go on long hikes, she raced her mom (it was a tie!) and she’s also excelling with her physical therapy exercises—all things she was not able to do before.
“Her physical therapist and I looked at each other in awe the other day during one of Emmy’s sessions. It was like we were watching a completely different kid!” Tiffanie said.
Although Kandaswamy and the other members of Emmy’s team are extremely satisfied with the results, their work is not over.
“During the first year after transplant, our antennae are still up. We are watching Emmy very closely and while we are very proud and happy about having achieved this success for Emmy…we still feel like we are living it,” Kandaswamy said.