Growing Pains
Fun Fact: My bones have been broken but I have never broken a bone.
When I was six months old, my family and I met Dr. Mackenzie. Dr. Mackenzie is an orthopedic surgeon at A.I. duPont Children’s hospital and specializes in skeletal dysplasias, aka dwarfism. For as long as I can remember my mom has said Dr. Mackenzie is worth breaking a bone for (this quote earned me extra credit on a paper I wrote in sixth grade). Anyways, at that appointment he told my mom and dad that my right leg would have to be straightened. No lie, my right leg was bowed to the point where it looked like the letter “C”. Five years later he performed what is called a tibial fibular osteotomy. Now, as my medical expertise is limited to what I learned in health class and on Grey’s Anatomy, I’m not going to go into the full medical procedure as I barely understand it myself. All I know is that I woke up with a rainbow camo cast that covered my entire leg and was wheelchair bound during the summer of 2000 (not exactly a fun time when you’re five years old).
Fast forward to 2006. I had just entered the sixth grade when I began experiencing chronic left ankle pain. After countless examinations and scans by three different doctors, it was decided that the left leg had to be straightened. I spent my Thanksgiving of 2007 in the hospital with an external fixator, what I called “ugly-metal-painful-thingy” sticking out of my leg. It was not the happiest of holidays but the results were worth it. The pain went away.
Why am I bringing this up? Yesterday, my friend and fellow advocate Bekah (read our conversation on the ADA here) asked the little person community on Facebook for their thoughts on limb lengthening. Quoting Dr. S. Robert Rozbruch, “Limb lengthening is achieved using the body's own capacity to regenerate new bone as well as the soft tissues, ligaments, blood vessels, and nerves that surround and support it.” From start to finish it takes about four to five months and the patient will only grow a few inches. It is an incredibly painful, irreversible procedure that is controversial within the LP community. It is seen as medically unnecessary and a painful way to conceal one’s dwarfism. Reading the discussion, I tried to articulate my thoughts and found myself wanting to listen rather than be heard.
I’ll admit there was a time where I wanted the procedure. In fact, it was right after I had my left leg straightened. I was a teenager struggling with body image and trying to fit in at school. I never saw limb lengthening as a “quick fix” for my dwarfism. Yes, there were times where I wished I wasn’t a little person but never saw my dwarfism as a disease that needed to be cured. I was, and still am, proud to be a little person. I just wanted to fit in and thought those few months of pain for those few extra inches would have made all the difference. I could buy jeans and dresses that fit me. Height requirements would no longer impede me. I would have been inches closer to “normal”.
Coincidentally, in 2006, Little People of America (LPA) published a position statement regarding limb lengthening. The state: “There are no established medical indications for symmetric extended limb lengthening (ELL)...the procedure is primarily being performed for adaptive, cosmetic, and psychosocial reasons.” They go on to say that success is not guaranteed and that, on a genetic level, the individual will always be a dwarf. They go on to list the complications of the procedure and stress that the patient must be of age to fully participate in the decision making process (rather than allow the parents to make the decision for the child).
My parents aind I had a series of challenging conversations. I remember going back and forth as they understood why I wanted the surgery yet they knew how painful and permanent it would be. I could tell that they were against it, but were willing to have the conversation because, at the end of the day, they wanted me to be happy. I think that, deep down, they also knew that I wasn’t going to go through with it, but had to let me come to that conclusion on my own. It took a while, a couple of years at least. I can’t pinpoint the exact moment when I decided against it but once I made that decision I have never looked back. I realized that a few extra inches were not going to make me faster or stronger. Straightening my legs did. Straightening my legs was medically necessary as it enabled me to walk, run, bike, dance. Pain no longer stopped me. Straightening my legs did not make me physically taller, but it did make it easier to be a little person in an average-sized world and that’s what really mattered
