I was born in 1986 with a severe right club foot. My foot was turned down and inward because my tendons were shorter than those in a normal foot. My family had to hear the news along with the doctor’s prognosis that “she will never walk”. Although it is the most common foot deformity that a baby can be born with (1 in 1000 births), it is not well known outside of the clubfoot community and a specialist is required for proper treatment. Luckily, I come from a family that believes in second opinions and beating the odds.
My treatment started with casts and boots… and it failed. My second surgeon, Dr. George Thompson at Rainbows Babies and Childrens Hospital in Cleveland, OH performed a successful reconstructive surgery on my foot at just 8 months old. My subtalar joint was fused and tendons were re-configured to straighten out my foot. Now that my foot was facing the correct direction, I forever lost the ability to point my foot or wiggle my toes. My big toe and second toe bones are disfigured and cause me to walk on the outside of my foot (shown in the xray image, below). Despite the odds, and with many thanks to my doctor’s approach for functionality not appearance, I had a fantastic childhood.
I grew up playing every sport I could possibly try. I was always the girl trying to out-play everybody and was even a competitive dancer thanks to an instructor who gave me the chance to compete without judges docking points for my un-pointed foot (think Dance Moms, but without all the crazy). I was most successful in Softball, an all-conference Fastpitch player in high school and even considered playing in College (but chose a way-too-time-consuming major instead). I could fool anyone into thinking there was nothing different about me… as long as I had shoes on.
My right foot and leg had developed noticeably smaller than my left side. At 14 years old I had to have surgery on my left knee to stunt the growth plates and allow my right leg to try and “catch up”. Before the surgery I had a 2+ inch difference in leg lengths and now only have a 1 inch difference causing much less strain on my lower back. I could stand longer and even run better now that my back/posture was improved. Although I was never a long distance runner, or the fastest runner, I grew to love it. I started running 1-3 miles a few days a week and ran my first 5K in college. It was only within the last 5 years that my birth defect started causing me pain. I was told growing up that I should expect pain, arthritis, and other problems later in life, but did not expect it so soon.
In my 20s I first started to experience pain when on my feet for several hours at work. As I got older, I could spend less and less time on my feet before unbearable pain. I’m now down to less than an hour before I have to sit down. I haven’t gone for a run in over 2 years. More and more frequently, I’m having to cut activities out of my life that I love because the pain is just too much. Now the pain is persists even when I’m not active. Some mornings require a foot massage before even attempting to step on the ground, and other mornings I’m hopping around on my good leg and not even bothering to step on the clubfoot.
The realization that I needed to find a solution came when I had to consider giving up the sport I love most: softball. I currently have somebody run for me when I hobble over to first base, but fear that I won’t be able to participate at all soon.
I struggled to find a doctor in my adult years that could understand my condition, my love for an active lifestyle, and my stubbornness to not accept the “just don’t run or walk for exercise” response that I kept getting. I finally met with Dr. Stephen Benirschke in Seattle, WA who not only knew my childhood doctor, but went above and beyond to help me find a solution to allow me to run again. I got a custom insole, did some physical therapy and tried stretching techniques, but it just wasn’t enough. Finally, he and his colleague told me about a revolutionary device that until about 2 weeks earlier had only been available to military personnel. It was called “IDEO” and stood for “Intrepid Dynamic Exoskeletal Orthosis”. I watched a brief video about the device and knew this was it, I was about to get my life back.
ABOUT THE IDEO
The Intrepid Dynamic Exoskeletal Orthosis (IDEO) was created by prosthetist Ryan Blanck in an effort to help injured military personnel avoid amputation after leg trauma. It is a cross between a prosthetic and an orthotic that, in summary, stores energy to deflect injury and minimize pain allowing users to walk, run, jump, etc. It was only recently made available to civilians. I met with Ryan Blanck in the Fall of 2013 and qualified as a candidate for the device. Unfortunately, my insurance denied any coverage. The custom-made carbon fiber device costs $9,000 out of pocket. This includes leg casting, prototype testing, device cost, and device use training. After much consideration for such a large expense, I began my efforts to pay for the IDEO out of pocket in March 2014. There is no price tag on quality of life and I hoped to regain mine.
By August 2014 I was well over 1/2 way to funding the device and have begun the process of getting it made. This blog will follow my journey as I begin my new adventures with my new leg from molding, to testing, to training, to LIVING!