If you're reading this you're either family, friends of ours, acquaintances or perhaps you're like us, a parent who has a child diagnosed with Fibular Hemimelia (FH) and you have no idea what it is so you've googled it and found this site. To those parents: we are just like you and this is a blog of our journey as parents with our youngest daughter as we reach each hurdle in her life. It's been difficult to communicate with all of our loved ones as there aren't enough hours in the day to talk to everyone. I realized quickly that if I'm going to keep normalcy in this house with 4 kids, I can't talk about Katelyn all of the time. So hopefully this blog will help relay information when I can't get to you personally.
As of the date of this post we have an almost 11 week old little girl, Katelyn. She was born via c-section and shortly after her birth I remember the pediatric nurse handing her to me, pulling out her little leg and saying "well it looks like some sort of amniotic banding has amputated her two little toes, and well she also has a scar on her shin from some sort of uterine trauma." I can't blame them though for being wrong, after all we live in a small town in Minnesota and when this type of thing affects only 1 in 40,000 according to some reports (actually 1 in 10,000 according to our doc but it's rare and so you get the point) the nurses don't see it all too often if at all. Katelyn ended up going to the NICU because she had some breathing problems that were urgent however that issue had nothing to do with her FH and that complication resolved itself within a few days. During our stay in the hospital they had X-rays taken of her leg and originally they told us that her tibia and fibula were fused together. Later we would learn that she actually has no fibula bone altogether thus the diagnosis of FH or the absence of a fibula. The spectrum of FH is very wide or so we've been told which means that kids can have all sorts of different issues resulting from the FH. Katelyn has a "moderate" case. The standard treatment for FH is amputation of the limb. Yes, it is a frightening thought and something I've cried over nearly every time I let myself go there. However with a moderate case the specialist has said that while we can't take amputation off of the discussion table, there is hope to "salvage" her leg through a list of surgeries and major bone corrections. I thought the word "repair" would be better but he said "salvage" is the medical term so we need to go with it. GREAT.
So in Katelyn's case as of her 7 week old x-ray Dr. Dahl (the specialist) said her hip seems ok (they can sometimes have shallow hip joints), her knee though smaller than normal seems in workable condition (but it's to be determined at this point), and her ankle bones...well he could identify just barely that she had the bones there because my husband's finger bones were in the way during the x-ray. However we can tell from the outside that something is bent or wrong on the inside. Her foot is smaller on that leg than on her regular leg partly because she's missing the rays (or the bones inside the foot) as well as the last two toes. Her left leg is also significantly shorter than her right (both the femur and the tibia are shorter), by about 20% and the tendons/soft tissue are also tight giving her foot a pointed down or ballerina look.
So, with that information all there is to do now is wait. There is so much more that I'd like to say. I'd like to share words of encouragement that have meant a lot to us or how this is all impacting her siblings and our family, but that will have to come in another post. There are lots of unanswered questions that we have right now but basically during this first year of life they grow so much so fast that you wait and see how her body is growing and shaping. Our next appointment is in November and we will know more then. For now though, every day as I change her diaper I kiss her feet along with the bump on her shin (we now know that it's actually her bowed tibia bone inside) and I pray that as she grows that God would stretch her bones and perhaps allow the ones that she does still have to grow in a way that would give us the best outcome for her to keep her leg. However, regardless of the outcome with her leg, her father and I know fully that she is knit together perfectly just the way God created her.
