Thank you, Ruth, for creating this site. I can see that you have offered a space for so many people to feel heard. Tears run down my cheeks as I read each story and understand the loneliness of so many of our journeys. I have never met another person with club feet, as far as I know, and have spent the majority of my life trying to portray myself as “normal” to everyone around me.
My name is Jen and I was born in 1970 in Johannesburg, South Africa with bilateral clubfeet. Casts were put on by day two and I had the first of my 13 surgeries at two months old. Like many, I spent my childhood with casts, tendon release operations, braces and doctor appointments. I hated doctors and hospitals. As a child, my parents were only allowed during visiting hours and the nurses tied me to the bed to keep me from standing on my feet. I even remember nurses telling me that they would call my parents and tell them not to visit if I didn’t take medicine or allow an injection. It was horrible! I had six surgeries on each foot by age eight.
In 1978, we moved to the United States (with a cast on from the last surgery) and I started 3rd grade. Kids were relentless with their questions and comments about my ugly shoes, braces, and my funny accent. I was referred to a new doctor at the University Medical Center in Tucson and he was my doc for many years. I hated going to the appointments because he always had 4-6 medical students with him and would talk about me as if I wasn’t there. After many years of him suggesting another surgery, a triple arthrodesis, I finally agreed at age 24, because I was about to be bumped off of my parents’ insurance. During the previous years, I avoided running sports and instead rode horses which was easier on my feet. I also enjoyed skiing, which somehow worked with the stiff boots giving me ankle support. I didn’t have a lot of pain, but he said the surgery was needed to correct my foot position and help avoid future problems.
After the “triple”, I endured chronic pain and reduced mobility. The fusion of my foot bones made anything weight bearing more difficult and uncomfortable and caused hammer toes and bunion-like protrusions from my gait. I continued to do as much as possible and have worked as a teacher for over 20 years.
While in grad school, I met my husband and started my adult life. In 2005, after the birth of my 2nd child, I was having excruciating pain and was limping badly. With a two-year-old and two-month-old, there was little time to be off my feet, so I went to a new orthopedic surgeon since my previous doctor had retired. He casually said that I should have a complete ankle fusion, which would be a 6-month recovery, most of it non-weight-bearing. When I told him that I couldn’t do the recovery with small children, he suggested I hire a nanny. Great advice for someone on a teacher’s salary:) So, I put it off and went back to him 5 years later. Same recommendation! I also went to a podiatrist for a second opinion and he too recommended the fusion.
Dring the past year, I essentially stopped doing any walking that I didn’t have to do. I used an electric scooter at school, never played with my very active kids or went anywhere that required walking. I started taking more pain medication and lots of hot baths. Last summer, I decided that I needed to have one last appointment or buy myself a personal scooter for the back of my car. My sedentary and painful life was not much fun and neither was I!
After asking around, I went to “The Guy” for feet and ankles in Tucson. He suggested an ankle replacement as an additional choice to the complete ankle fusion and said they would both address my pain. The complete fusion would eventually take a toll on my knees, hips, back etc… According to him and my research, ankle replacements have come a long way in the past few years, so I decided to try it. He had previously done the surgery on patients with clubfeet.
Today marks exactly six weeks since my surgery on Feb. 3rd. I am now in a removable boot and have just started PT with weight-bearing as tolerated. I am still very reliant on my crutches and knee scooter, but am beginning to feel more human. It is still very early in my journey, since I was told 6 months to 1 year, at least, before I am walking well again, but I am trying to be optimistic.
I feel like a could write a book here. There is so much about this process that is not seen by others. The emotional, psychological, physical part that only another person with a similar experience could understand.
Thank you for giving me this opportunity and I promise to keep you posted!