Searching for a Surgeon

Knox had seen an orthopedic surgeon at Children’s Hospital of Colorado since he was born. We had planned on having him perform Knox’s rotationplasty around age 5. However, he abruptly retired early due to health issues in 2017 — leaving us floundering as we searched for a new surgeon with the right experience.

We started our journey to find a new surgeon here in Denver. First, we met with another surgeon at Children’s. He has a great reputation and we liked him, but his specialty is oncology. If you read the surgery page on this site, you’ll learn that most rotationplasties are performed on children with bone cancer in the knee. The surgeon we met with at Children’s said he performed several rotationplasties a year, yet when I asked how many he had done on kids like Knox — those with severe congenital leg deficiencies — he replied, “one.”

As comfortable as we were with Children’s Hospital, we just couldn’t let our child be only the second. It matters a ton because kids with cancer have normal anatomy. Knox’s anatomy in his little leg is entirely different. The locations of his arteries, nerves, bones and muscles are unique. Plus, we needed his knee to become his hip. That part of the surgery is very intricate and is not something that needs to be done on rotationplasty patients with bone cancer. We just felt that though he was accomplished, this surgeon didn’t have the right experience for our son’s condition.

Next, we consulted with another orthopedic surgeon at a different children’s hospital in Denver. She essentially told us that she did not have the experience or skillset to operate on as complex a case as Knox, although she agreed rotationplasty was the best course for him. At that point we resigned ourselves to having to go out of state for this surgery — a prospect that would completely change our timing and financial repercussions.

We belong to several Facebook groups for kids with conditions like Knox’s, and when I asked for recommendations for rotationplasty surgeons, several parents recommended a surgeon in Seattle. Since JP’s Omi and Farfar (grandma and grandpa) live in Seattle, we decided to plan a trip to visit them and see the doctor. Yet again, the surgeon said she wasn’t qualified to perform the operation on as complex a case as Knox. She recommended we see Dr. Standard in Baltimore or Dr. Paley in West Palm Beach, Florida.

Now, these two names were not new to us. We had known for years that these two doctors saw more congenital limb cases than probably any other doctors in the world. However, since we had planned on having the surgery in Denver, we hadn’t felt the need to consult with them. After meeting with the Seattle surgeon, it really hit us that Knox’s PFFD/CFD was so severe and complex that we would have to reach out to these surgeons.

We first had an online chat with the Baltimore surgeon. After seeing Knox’s x-rays, he immediately said rotationplasty was the best option and he was comfortable doing the surgery. JP and I had talked and decided the best timing for our family would be early 2019 — our new baby would be one year old and Knox would have 5-6 months of recovery before entering kindergarten. At this point, it was a toss-up between going to Baltimore or West Palm Beach. Considering the seasonal weather, local support systems and the ease of renting a place to stay for 4-6 weeks, we decided Florida made the most sense for us. My parents live about 2.5 hours from West Palm Beach and could easily be there for the surgery, support us and help watch the baby. We planned a trip to visit my parents in June 2018 and drove over to visit Dr. Paley in West Palm Beach.

We could tell from his questions and conversations with attending staff that, unlike visits with every other doctor we’d seen, cases like Knox’s were not unfamiliar to them. They had seen and operated on plenty of other kids just like him. Like everyone else, they agreed rotationplasty would give Knox the best outcome. So, happy to be in confident hands but overwhelmed to be faced with a lengthy cross-country trip (at the height of Spring Break season, no less), we made the decision: We would be having Knox’s rotationplasty surgery in Florida in approximately 8 months, around February 2019.

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