Initally we were face with do we legthening or amputate, a hard decision for a parent to have to choice for their young child. For us it was extremely hard, JP falls on the moderate to severe range of Fibular hememila (FH), so many would suggest amputation for a "normal" life. But we met with 3 somewhat local hospitals and 3 different surgeons who all said legthening was a possibility...we could have met with with a 4 local hospital/ doctor, but we heard they favored amputation and after talking to the other 3, we knew that wasn't a journey we wanted to take at this time.
We had thought that after deciding legthening our choices were done, but they weren't. Now it was time to choice the doctor to do it. There were so many factors that weighed in- being close to home (not only JP, but so we could see Aiden during surgery/ recovery/treatment), what will our insurance cover, and most importantly how familiar are the docs with Jonathan's birth defect and the legthening procedures.
We easily narrowed it down to two- the "experts" and the doc who was more local who studied FH with the expert and trying to make herself known in the FH world. I personally struggled for months with this decision. I had no reason not to trust each doctor, both we're caring, kind, and loving to my son; both explained exactly what would take place Jonathan's first yr or so and first surgery.
In the end we chose the doctor at DuPont, trained by the best. From day one she showed us compassion, told us to what to expect, but yet focused on the here and now. As we moved into surgery we never saw this change. She was always a text message, email, or Facebook message/post away to answer any questions we had/have during that time.
Our FB group lately has had an emphasis on pioneer doctors and I quickly realized that I was initially shy to say we chose JPs doctor who wasn't an "expert". I was worrying about judgement on our choice of doctor. No, after going through the first surgery, I realize it's about confidence in your doctor. Maybe they're not as experience, but they have an interest in their condition, keep up to date on new technology/ treatment etc., trying to make their mark- and I have decided to speak out. I realize everyone has to start somewhere -even the pioneer doctors. I'm so glad we choose JPs doctor and who knows maybe he'll be her poster child someday.
The discussion going on in our group was an eye opener- it told me not to judge- not to judge lengthening or those who choose amputation. Everyone is doing the best they can based on their own family and resources.
