RED LODGE — Like most little girls, 3-1/2-year-old Peri Erickson shares traits of both her parents.
The shape and color of her blue eyes are similar to her dad's, Justin Erickson. Her fine, light-brown hair is much like her mom's, Claire Erickson.
And Peri tries her hardest to stay up with her 5-year-old brother, Shay.
“She’s always looking up to him,” Justin, says. “She mimics his actions.”
“There’s lots of wrestling,” Claire, agrees. “Through this whole deal it’s pretty amazing she’s kept up as she has.”
“This whole deal” is a medical condition that the youngster has battled since birth. Biliary atresia, a rare disease that occurs in infants, affects the liver and the bile ducts.
The liver makes bile, which is used both to remove the body’s waste and to break down fats. In babies with biliary atresia, the bile in the liver is blocked, keeping it from draining into the intestines.
The disease, in addition to causing life-threatening complications, eventually leads to cirrhosis of the liver. But a transplant can give the child a new lease on life.
And that is why on March 21, after surgery in Denver, the little girl will share one more thing in common with her mom. Peri’s body will contain a part of Claire’s liver.
“Just to have Claire be a part of the solution is a perfect finish to this story,” Justin said, sitting with Claire at a dining room table in the home where the family lives, a few miles west of Red Lodge.
Justin, who grew up in Billings, ventured to Alaska and then wound up in Colorado, where he met Claire. She’s a native of Carbondale, Colorado.
They moved to Red Lodge in 2009 and got married a year later. Justin is a supervisor for Riverside Contracting, a company that does heavy highway construction.
Claire stays busy caring for their two children, studying business at Montana State University Billings and doing the snow report three times a week for Red Lodge Mountain.
“That helps us get our ski passes,” she said, an activity which she and Justin enjoy doing with their two children.
“Usually Peri’s only good for two runs,” Claire said. “She skis and then loves having hot chocolate with lots and lots of whipped cream.”
The family stays active, camping and fishing in the summer and riding bikes around town. Shay plays baseball, and even though Peri’s condition caused poor growth and a failure to thrive when she was a baby, Claire said her daughter "hasn’t let that hold her back from doing anything.”
On the day of the interview, Peri is a bundle of energy. She offers a visitor to her bedroom a bite to eat from her collection of plastic foods. Then she hands out one of her Valentine’s Day cards that features Elsa and Anna and “that’s Olaf,” she points out, all from the movie “Frozen.”
She and Shay run around the house, chasing each other, and she chatters up a storm. To a newcomer, there’s little evidence of the disease’s toll on her body.
But while she plays, supervised by her grandmother, Carole Bleeker, Justin and Claire tell a different story.
Claire’s pregnancy and labor were normal, she said. But Peri’s medical condition was evident just after her birth at Billings Clinic in August 2013.
“Right after she was born she was really jaundiced, so her doctors knew something was up with her,” Claire said. “It failed to resolve itself in the first week and a half.”
A liver biopsy confirmed she had biliary atresia. Soon after, a decision was made to send Peri down to Children’s Hospital Colorado for surgery.
Justin remembers it happened when Peri was only 24 days old. Claire describes the procedure: “They took out her common bile duct and attached her small intestine directly to her liver in hopes her bile could pass through there.”
The surgery was a success and her liver functions well. But the disease comes with side effects that have been tough on Peri.
Her body can’t absorb fat-soluble vitamins or fats very easily, which has led to serious nutritional deficiencies. Peri, on a feeding tube for a year, now is on a highly specialized formula.
You have free articles remaining.
Even more difficult, Peri has developed esophageal varices, where veins grow into the esophagus and may bleed. If that internal bleeding can't be stopped, it's fatal.
“We’ve been down to Denver probably 12 times in the last year, and half of those (trips) were to treat these,” Claire said.
Three of those times, in September 2015 and January and November 2016, required Life Flights, Justin said.
“We’re not fixing the problem, we’re in the stage of preventing further damage,” he said.
After that last Life Flight, doctors decided to evaluate Peri for a liver transplant in mid-January. Ironically, the little girl is not the sickest child on the list for a transplant, Claire said.
“Peri’s like at the opposite end of the spectrum because her liver function is relatively normal, but the complications are very severe,” she said.
Then an alternative, of finding a living donor, came up. Claire traveled to Denver in February for two days’ worth of evaluation to see if she would be the right fit.
"They told me for every five or 10 people that come in, they only accept one," Claire said.
She underwent an MRI, a CT scan, and blood work, along with meetings with a social worker, a psychologist, a surgeon and a liver specialist. After all the results were evaluated, it was determined that Claire qualified to donate the left lobe of her liver to her daughter.
Saying she wants to be the one to do this for her daughter, tears welled up in Claire’s eyes.
“It sounds weird, but to go through the physical pain will feel good,” she said. “Watching all she’s been through, I want to feel some of that for her.”
Eventually Claire’s liver will grow back to almost full capacity. And the portion of the graft Peri receives will also grow.
“It’s very cool,” Claire said.
“It’s amazing,” Justin added.
Justin, Claire, Peri and Shay will head down to Denver on Tuesday, and the surgery is scheduled for March 21.
“We get admitted on the 20th, the first day of spring, which is so symbolic,” Claire said. “It’s great.”
Claire’s operation will begin first at the University of Colorado, to remove the lobe, and then, two blocks away, at Children’s Hospital Colorado, surgery will begin on Peri to remove her liver and implant a portion of Claire's liver.
Justin admits those will be some tough hours for him.
“I’m absolutely terrified that the best thing that ever happened to me is in one hospital and the best thing I ever created is in another,” he said. “But I’ve got to stay strong.”
Family down in Colorado will lend help. And family and friends in Red Lodge and Billings have also been with the family every step of the way, Claire said.
“The support we’ve gotten through this entire ordeal is incredible,” she said.
After the transplant, Claire and Peri will remain in Colorado with family for three to four months for continued medical checkups. Peri’s full recovery will take a full year.
“Hopefully it works really well,” Claire said.
Peri could go from taking 10 meds a day to hopefully only one within a year and be in much better health, Justin added.
When the little girl was 2, she was all about snakes and sharks and dinosaurs. But when she turned 3, her thoughts turned to princesses.
And once Peri is feeling better, she’s told her parents she intends to go to Disney World, Justin said.
“She wants to meet Elsa.”