They waited until she was born to make any decisions, but every doctor they visited agreed that amputation would be the best path forward.
“Even though the thought of our baby girl going through this surgery was tough, our goal was to have Charlotte walk as quickly as possible and for her to have a good quality of life,” Stephanie said.
Their pediatrician recommended the family visit Shriners Children’s. “When we went to our first visit, we instantly felt at ease,” Kevin said. “And because Shriners Children’s specialized in limb deficiencies and deformities, we felt like we were in the best hands.”
The surgery was a success, and Charlotte was crawling around shortly thereafter. When she was fully recovered, the next stop was the Pediatric Orthotic and Prosthetic Services (POPS) department, which makes customized orthotics for patients, all under the same roof.
“We greatly appreciated that we didn't have to go elsewhere for Charlotte to get a leg since the hospital had an in-house prosthetics department that consulted with the doctors,” Stephanie said. “No other hospital we looked at offered this type of care.”
When she was 16 months old, Charlotte received her first leg. “I didn’t like it at first, and I would just crawl around with it hanging behind me,” she said. “But I figured it out and was walking with it by about 17 months,” she said. “From that point, I got a new leg almost every year because I was growing pretty quickly. My prosthetist, Sabrina, is great and made upgrades and modifications as I grew.”
Up until age 4, Charlotte had a sleeve over her prosthesis that worked well. But as she became more active in sports like soccer, basketball and ultimate Frisbee, she moved to a prosthetic leg with an ankle that provided much more functionality and range of motion to accommodate the jumping, pivoting and sudden stops.
“The prosthetic legs gave Charlotte the confidence that she could compete the same as everyone else,” Stephanie said. “She never thought twice about trying a new sport.”
We greatly appreciated that we didn't have to go elsewhere for Charlotte to get a leg, since the hospital had an in-house prosthetics department that consulted with the doctors. No other hospital we looked at offered this type of care.
When she was 11, Charlotte returned to Shriners Children’s Portland for a second surgery, this time with Heather Kong, M.D.
“There were two parts to the surgery,” Dr. Kong said. “One to slow down growth at the knee to let the leg strengthen with growth by inserting a plate and screws, and the other was to cut and straighten the tibia bone with a plate and screws to make the prosthetic fitting easier and keeping her joints healthy and stable into adulthood.”
“It was pretty rough for me initially,” Charlotte said. “There was some pain, and I had to be out of my prosthetic leg for about six weeks and use crutches and a wheelchair to get around. I then had a second surgery after six months to remove the plate, which wasn’t quite as bad.”
After the second surgery, Charlotte worked with the therapy services department at Shriners Children’s Portland to strengthen her leg, focusing on specific movements to get her back to the sports she loved.
Now 13, Charlotte sees Dr. Kong at Shriners Children’s Portland once every six months and visits the POPS department periodically for leg adjustments.
“The best part of working at Shriners Children’s is watching our patients progress as they get older,” Sabrina Jakobson, CPO, said. “It’s been a joy to watch Charlotte grow into her teen years and see her have the confidence to pursue every sport she set her sights on.”
Charlotte has also embraced her role as a Patient Ambassador for the hospital. Shriners Children’s Portland celebrated its 100-year anniversary in 2024, and Charlotte was a big part of the celebrations as a Patient Ambassador.
“I’ve spoken at a gala, been in a commercial, helped at fundraisers and so much more,” she said. “It is an amazing experience, and I’m glad I get to be helping.”
“I’ve enjoyed seeing Charlotte at Shriners Children’s events,” Dr. Kong said. “I can tell that her parents are so proud of her.”
Stephanie and Kevin have watched Charlotte go through it all from the beginning, through many years that Charlotte doesn’t remember, but that they will never forget. “From the reception staff to the nurses, doctors, social workers and physical therapists to the fantastic people in the POPS department,” Stephanie said, “we have had the best care for Charlotte. We have had an amazing experience at Shriners Children’s.”
Charlotte with a fellow Patient Ambassador at the Shriners Children's Portland 100-year anniversary.
Charlotte in action on the court.
Charlotte on surgery day, 2022.
Charlotte supporting the team post-surgery.
