Friday, May 10, 2013

Never Have I Ever Had 10 Toes

Have you ever played that game "Never have I ever..." where you say something you've never done and anyone who has done it is out? Well, I'm the champ of that game. Never have I ever been on an airplane. Never have I ever been to Disney Land. Never have I ever had 10 toes. Wait, what? That's right. I've never had 10 toes.

I was born with a condition known as fibular hemimelia, which is characterized by a completely or partially missing fibula. Because the fibula is missing, the tibia is often bowed, resulting in a length discrepancy between legs. Usually the discrepancy is anywhere from 15% to 30% difference in leg length. My parents were told that when I was done growing my right leg would be about 6 inches shorter than my left. The missing bone also results in an unstable ankle joint and a partially formed foot. Thus, the reason I have never had 10 toes, I was born with only 3 on my right foot. 

Well how did I get it? Did my mom eat something she wasn't supposed to? Did she do something crazy while she was pregnant with me? No, my mom did nothing wrong. There is currently no known cause for the condition. It randomly occurs within the first two months of fetal development and for whatever reason, the leg doesn't form correctly. 

There are two treatment options, 1) leg lengthening and reconstructive surgeries or 2) amputation and a prosthesis. The first consists of multiple major surgeries over the course of 15 years to lengthen the leg bone and muscle and reconstruct the foot and ankle. This option may have allowed my leg to be salvaged and I may have gained full use of the leg by the time I reached adulthood, but I would have had to endure huge amounts of pain and would most likely have missed a lot of schooling due to the care I would have required. The second option was to amputate the foot at about 12 months of age, issue a prosthesis about 2 months prior to the surgery, and learn to walk on the prosthesis. I would have complete mobility and function of that leg comparable to the other one and life would go on as normal, except for the occasional stares and curious questions of others.

My parents chose the latter (a decision I am SO grateful for) and I underwent a Symes amputation (meaning through the ankle joint) when I was 14 months old. A pie shaped piece of bone was also taken out of my bowed tibia to straighten it out. A few months later I was in my new stylish hot pink prosthesis and learning to walk, just like any other toddler.

Over the years, I have gone through 18 legs, all provided free of charge by Shriners' Hospital, a wonderful organization which I will talk about in a later post. Each one is unique and has gone through it's own challenges with me. And each one has made me stronger. People have asked me, "Do you ever wish you had 2 real legs?" and my answer without hesitation is always no. If I had 2 real legs, I probably wouldn't have accomplished half of the things that I have. If I had 2 real legs, I wouldn't have met some of the most amazing people I have ever met. If I had 2 real legs, I wouldn't have had many of the awesome opportunities that I've had. And quite frankly, if I had 2 real legs I wouldn't be me. Being an amputee has had such a huge part in making me who I am and I wouldn't have it any other way.

So if you ever wondered what happened to my leg but were afraid you'd offend me if you asked, there ya go. And for future reference, if you have questions just ask! I'm not offended by them at all. In fact, I'd rather you ask questions than just have to wonder for the rest of your life. So if you have questions, feel free to comment below :)


  1. I loved reading your post! I was not aware of some of the details and I never asked because it really never occurred to me. I guess I saw you beyond any other issue :) You have taught me a lot and I have a ton of respect for you :)

  2. One question.....
    "Your leg is still not better?"
    & one more.....
    "How long have you been hurt?"

    Hahaha, I love you!

    1. Nope. Oh ya know, just since I was born. Hahaha that was the best :)

  3. You have adjusted so well that others (like me) forget that you don't have two natural legs to stand on. When we were talking about Grandma's shower chair and someone mentioned you might want it I just gave them a blank look. It took me a minute to realize you only have one leg in the shower! You have really rose to the challenge. I am so proud of you.