Fibular Hemimelia Continued..

Earlier this month, our family of three made a trip to Shriner's Hospital for Children in Salt Lake City, UT, where after much consideration, have decided to have our daughter's surgery for her Fibular Hemimelia. It makes the most sense when it comes to long-term prosthetic fittings, and after speaking with many parents who have taken their child to a Shriner's.

We had been taking Carmen to an orthapedic surgeon in Denver since she was a month of age, and saw her every 5-6 months until she turned a year old. The doctor from Denver spoke with us about our options for surgery and highly recommended doing what's called the Boyd Amputation procedure (amputations are often opted for over lengthening surgery, due to larger differences in length, and for better functionality with a prosthetic), and it seemed like the best option, especially on paper. With a Boyd amputation they would remove the foot, but re-attach the heel bone to the end of the tibia, giving her more length, more residual limb for a prosthetic to fit onto, and it would allow her to bear weight on that leg without a prosthetic. She also said that the healing would be better. The other option that is common with Fibular Hemimelia is what's called the Symes amputation; it's basically the same as the Boyd, but the heel bone is not re-attached. According to the surgeon in Denver, this amputation may not allow for weight bearing as well as the Boyd, and would not provide as much length for prosthetic attachments. At our final appointment with the surgeon in Denver, we discussed our feelings about possibly going to Shriner's, and she said that long-term the "flow" may be better there. After hearing that on top of what he had already been feeling, we made our decision to go to Shriner's for a consultation for surgery.

Before meeting with our surgeon at Shriner's, we were obviously set on having a Boyd amputation done, but after speaking with other families who have a child with Fibular Hemimelia, we came to realize that for some reason, most surgeons opted for the Symes amputation - which really stumped us (no pun intended). I prayed that the surgeons in Salt Lake City would agree to go with the Boyd, and not push the Symes on us. I thought, 'Maybe the Boyd is less common because it requires more work, and surgeons want to keep it simple?'.

At our consultation in Salt Lake, the surgeon did suggest the Symes amputation, and assured us that most surgeons only do the Boyd to preserve length for those children who don't have much, whereas our little Carmen is in the gray zone; meaning that she's just barely too short to qualify for lengthening surgeries, and keeping the heel could in the end be more of a hindrance when it came to prosthetic fittings. The surgeon explained that if a residual limb is too long, it could make it difficult to provide enough space for an ankle component. In other words; Carmen had plenty of length already, and keeping the heel would put her at risk for needing more surgery. When we asked about weight bearing without a prosthetic, she also reassured us that most of those who have had a Symes are weight bearing on that limb, and that every single one of her patients are. This was all very reassuring! Of course, as soon as we got out of our appointment I started reaching out to other families to see what their experiences were with the Symes, and not a single one had a thing to complain about. We did hear from a family who had the Boyd procedure done, but it sounded like it was mostly done to preserve length, as our surgeon at Shriner's had told us. Either way, we know that our daughter is in good hands, and that there are angels looking out for her.

Surgery has been scheduled for Oct. 15th, at Shiner's hospital in Salt Lake City. We anticipate a two day stay in the hospital, and then a post-op checkup 7-10 days after surgery, so we plan to stay in Salt Lake during that time. Carmen will leave the hospital in a cast, and we assume it will be removed during her post-op appointment with the surgeon. She will get her first prosthetic in Salt Lake City in December, when we go for her first fitting and to meet with a physical therapist (we will be there from the 8th-15th). Maybe our little girl will take her first steps just in time for Christmas? It's on my wish list :)

I just want to thank all of you for your support through all of this, whether it be your words of encouragement, or your optimism. I especially would like to thank my family - my in-laws in particular, for helping to make this time go a lot more smoothly for us than it otherwise would have; Carmen is blessed to have all of you in her life, and so am I.

To be continued...