Peri Erickson, all 25 pounds of her, turns to her mother in the hospital exam room, curls her right arm in the air and demands: “Feel my muscle.”
Claire Erickson gently pinches the flesh of her daughter’s slender biceps and smiles. “Dang, girl, you must be working out,” she says.
At 3, Peri hasn’t been hitting the gym, but she’s definitely feeling stronger. On March 21, she underwent a liver transplant at Children’s Hospital Colorado that has helped solve medical problems that began at birth with her diagnosis of biliary atresia, a rare and life-threatening disease of the liver and bile ducts.
And though her condition wouldn’t have placed her high on the list of patients seeking potential deceased liver donors, Peri took a different route. She found a living donor — and she didn’t have to look far.
“I was the first one tested and, lo and behold, I was a match, so we didn’t have to continually look for someone,” says Claire, whose family over the past three years has shuttled Peri to doctor visits from their home in Red Lodge, Mont. “It doesn’t always work out like that for everybody.”
Peri and her mother participated in only the second pediatric live-donor transplant this year performed through a partnership between Children’s Hospital Colorado and the University of Colorado Hospital.
But Dr. Michael Wachs, the surgical director of abdominal transplantation at Children’s who performed Peri’s surgery, says several other families have expressed interest and he hopes eventually live donors will figure in 30 to 40 percent of the hospital’s pediatric transplants.
“Babies are harder to transplant with the current (deceased) donor pool,” says Wachs, who has been part of the live-donor cooperative between Children’s and University hospitals since its 1995 inception. “To compete for a portion of an adult liver, she would have to have been much sicker to be higher up on the list. Live donation allows you to bypass the list.”
Live donation also offers the advantage of familiarity with the donor that gives doctors a clearer view of the liver’s quality ahead of time. There’s also an ability to control the timeline of the surgery so it can be done at the optimal point for both donor and recipient.
By dodging the uncertainty of the waiting list, recipients sidestep a donor pool that has changed dramatically over the past 30 years, Wachs notes. Young donors are fewer. Most tend to be in their 50s or 60s and often overweight, with potentially less healthy organs.
They may still be viable donors for other adults, but in a pediatric scenario where the size of the adult liver would have to be reduced, that could place added stress on the organ.
In Peri’s case, Claire and husband, Justin, have long known that a transplant loomed somewhere in the future.
“We didn’t know at what point it would become a reality,” Claire says. “But probably within the last year we started to talk more seriously about it. Every visit, we felt half a step closer to doing a transplant.”
On a January visit to Colorado, doctors broached the idea of the live-donor route. Justin, a supervisor for a road construction company in Montana, arranged to stay in Colorado for the surgeries and only recently returned to their home in Red Lodge with Peri’s older brother Shay, 5.
But there was little doubt that Claire would be the donor.
“I knew it would be me,” she says. “I wanted to do it ever since live-donor was an option. I know I’m resilient, my body is healthy, and I wanted to do this for her. My husband is the breadwinner, and having him missing out on work would have been a scary process. But we definitely had friends and family members lining up.”
Potential donors undergo rigorous evaluation in both medical and psycho-social areas, says Dr. Elizabeth Pomfret, the chief of transplant surgery at University of Colorado Hospital who performed Claire’s surgery.
“What’s critical is a compatible blood type — not necessarily identical, but a compatible blood type,” she says, adding that anatomical considerations rank second. “Depending on how big the recipient is dictates how much liver volume we’d need from the donor. In this case, Peri’s a little girl, so thankfully she doesn’t require very much liver volume.”
Data from two types of body imaging were merged and sent to a company in Germany whose software created three-dimensional models that advised where to divide Claire’s liver, how large a portion to transplant and how to approach blood supply.
“It gives us a very detailed road map,” Pomfret says.
She stresses that anyone 18 or older can be a living donor — it’s not necessary to be related or even genetically similar to potential recipients.
“The number of people waiting has outstripped supply, basically,” Pomfret says. “This is a critical option to have available for recipients who would not otherwise make it.”
Fear or uncertainty over the transplant process never figured into the equation, by Claire’s calculations.
“I was so ready to move on and get our daughter healthy, and give her the best opportunity for a normal life,” she says. “Once you let fear and doubt and worry creep in, it can consume you.”
The night before the surgery, Peri was admitted to Children’s, where her parents stayed overnight in their daughter’s room.The next morning, around 5:30, Justin walked Claire across the medical campus parking lots to University of Colorado Hospital, where she would undergo her surgery.
“It smelled like spring out, calm and clear, a beautiful morning,” Claire recalls of the March day. “I felt refreshed and hopeful. I was just ready to do it, anxious and excited about it, knowing she was in the best hands possible and I was, too.”
RJ Sangosti, The Denver Post
Peri Erickson, 3, underwent a liver transplant in which her mother was the living donor. Peri and her mother, Claire Erickson, were at Children’s Hospital for a follow-up exam April 24, 2017 in Aurora.
While Peri was prepped at Children’s, Claire underwent surgery at University of Colorado Hospital — just a short distance away on the Anschutz Medical Campus in Aurora. Pomfret removed a portion of the left lobe of her liver while circulating nurses at both hospitals kept in touch via cellphone to coordinate the transfer.
When the timing was right, that portion of Claire’s liver was put on ice and shuttled over to Children’s to replace Peri’s diseased organ. The transplanted portion will grow right along with Peri, while Claire’s liver will heal and regenerate in a month or two.
Both surgeries went well, although about a week into her recovery Peri underwent a second surgery to correct a blood flow issue before it could damage the liver graft.
At her most recent checkup, she proudly lifts her purple shirt to reveal the wavy scar that extends across her abdomen. Dr. Shikha Sundaram, medical director of the hospital’s pediatric transplant program, is impressed.
“Oh, it’s looking good!” she says, and nods as Claire details the growing appetite — French fries, chicken strips — that has added a pound to the girl’s tiny frame.
Claire notes that her daughter has recently shown an inclination to run, and Sundaram encourages the increased activity.
“Kids listen to their bodies,” she says. “If she’s wanting to run and play, it’s because her body is ready.”
Peri remains on about 10 medications, but slowly those will be reduced based on her blood work. Sundaram cleared mother and daughter to move from their Denver-area quarters to Carbondale, where Claire grew up, so they can visit family and return to Children’s for gradually less frequent checkups.
Before long, they will return to Montana, where Peri can continue her recovery. Wachs estimates her risk of a severe rejection episode that can’t be reversed at “close to zero.”
Claire can see the upside of live-donor transplant reflected in her daughter’s playful eyes.
“I think people don’t know a lot about it,” she says, “but it wasn’t hard to do — especially to save your own child.”
RJ Sangosti, The Denver Post
Peri Erickson, 3, underwent a liver transplant in which her mother was the living donor. Peri with her mother, Claire Erickson, and grandmother, Ramona Griffith, left, leave after their appointment at Children’s Hospital for a follow-up exam on April 24, 2017 in Aurora.