A Patient's Handwritten Note Captures an Honest and Trusting Moment

When she was 3, Piper told her family, “My leg just doesn’t work.”

Her family had noticed she had a limp, so they decided to have her leg medically evaluated. After receiving multiple inconclusive results ranging from a sprained ankle to leukemia from their family doctor and several specialists, Piper was diagnosed with the rare bone disease, fibrous dysplasia.

Patients with fibrous dysplasia form scar-like tissue in the place of regular bone structure, which can lead to fractures. Because Piper’s doctor was not a pediatric orthopedic specialist, and was not familiar with this condition, her family began to seek medical care elsewhere. “We needed to find someone who could give us a better idea of Piper’s future,” said Julie, Piper’s mom, “but we didn’t know where to start.”

Piper’s grandmother suggested that the family investigate if there was a Shriners Children's hospital in Oregon. After learning about Shriners Children’s Portland, Piper’s family made an appointment with Dennis Roy, M.D. “I remember going in with loads of concerns and leaving confident that Piper would be just fine,” said Julie. “And for the next 3.5 years, she was just fine.”

Piper’s family moved to Arizona and found a local doctor who could see Piper for checkups. However, they would commute to Shriners Children’s Portland for her main orthopedic care appointments.

While in kindergarten, Piper developed a new, more severe limp. A surgeon in Phoenix ordered an MRI and CT scan. The scans revealed that Piper had developed a pathological fracture, and her femur was now bending. After consulting with Dr. Roy, the family was informed that Piper would need crutches and would need to have surgery as soon as possible. Unfortunately, due to the COVID-19 pandemic, Piper was unable to get the required surgery in Arizona.

After learning of Piper’s situation, Dr. Roy, who would be retiring soon, called Piper’s family to suggest they talk with Jeremy Bauer, M.D., an orthopedic surgeon at Shriners Children’s Portland who could help the family get Piper the care she needed.

Dr. Bauer remembers well meeting Piper and her family. “Piper has a difficult problem with diseased bone in a growing child.” said Dr. Bauer. “When we first met, we had to treat her immediate problem of a fracture that was causing pain. Because the bone doesn’t grow normally, it can become more deformed if left untreated. We decided on a treatment plan that included staged surgeries that allowed us to first reorient the bone to make it straight.” Just three months later, in June of 2020, Dr. Bauer was able to successfully complete the surgery. The family was grateful to be back at Shriners Children’s and thankful for Dr. Bauer’s care and quick action.

That care continued to help Piper through even more surgical procedures at Shriner’s Children’s. The following March, during a pre-op meeting, Dr. Bauer noticed a possible new fracture in the upper part of Piper’s femur. After ordering a CT scan, Dr. Bauer confirmed that there was indeed a fracture and was able to change his surgical plan accordingly.