What I know of my babyhood is what little my parents shared with me. To this day, my mother still can’t talk much about the experience without her eyes tearing up a bit. And it has been 48 years. As soon as I was born, the doctors told her that something was wrong with my left leg. In those days, fathers did not go into the delivery room, so my mother was given the news alone at first. My tibia was not fully formed; it essentially was in two disconnected pieces, and I had no fibula at all.
I’m not sure when the official diagnosis of pseudoarthrosis was made, but at six weeks old, I had my first operation. Surgeons grafted some tissue that my father donated to try to connect my tibia. My earliest memories are of being in the hospital having some sort of operation. If I wasn’t wearing a full-length cast, I was in a full-length brace. Back in those days, braces were clunky devices made of metal and lace-up leather. My left foot was always smaller than my right and slightly misshapen.
As I got older and grew, my left leg did not keep pace with my right. I had an operation on average about every 18 months. Doctors tried grafts of cadaver bones, bone from my own hip, screws, rods, pins, whatever they could to keep my tibia together. I don’t remember many of the fractures, but one in particular sticks in my mind. I was probably in 2nd or 3rd grade. I had fallen asleep on the couch without my brace on. At some point, I bumped the coffee table with my left leg, and woke up with a fracture.
Despite all the doctors’ best efforts, my tibia was always bowed and brittle. My leg brace helped me walk, but without it, my leg was weak. My father was in the military, so many of my hospital stays were on military bases. When we lived in Hawaii, I spent several months in Shriners Hospital. They had school facilities in the hospital, so I went to class each day and kept up with my school work.
When I was about 12, surgeons removed the growth plate from the knee area of my sound leg in hope that my left leg might catch up. My legs grew to within about an inch of each other, but my left foot was still two shoe sizes smaller than my right foot. It was always a challenge to find a style of shoe that was available in two sizes with a heel that could be raised and also accommodate the metal bars of a brace (this was before the days of the plastic AFOs). I could forget about actually finding an attractive shoe.
The operations continued through my early teen years. My father was stationed in Germany when the surgeons there finally suggested amputation. It’s possible that doctors had made the suggestion earlier in my life, but my parents never said anything about it. I think the decision was too difficult for them to make on my behalf. And there was always the big “what if” question that loomed over their heads – what if we amputate, then a cure is found. My parents didn’t want to make that choice for me. The surgeon who made the recommendation made very compelling arguments for amputation when we talked about options. Ultimately, it came down to quality of life. They could try 10 or 20 more operations, and I could still be confined to a leg brace wearing two different sized shoes... or I could have two legs that matched, wouldn’t have to worry about fractures anymore, live an active lifestyle, and the clincher for a 15-year old girl—I could wear high heels! Emotionally, it was a hard decision to make, but logically, there was no other alternative.
In August of 1977, I was med-evac’ed to a military hospital in the States for the operation. The amputation went smoothly, but because I had so much scar tissue from previous surgeries, the site didn’t heal. I had to go back in for a revision to remove another quarter inch of bone and damaged scar tissue. My mother and I lived in an apartment near the base while I went through rehab being fitted and trained with my prosthesis. We were finally able to rejoin our family in Germany just before Christmas.
My amputation was the best decision I ever made. I run, ski, wear two shoes that match with heel heights ranging from flat to 3 inches. I married my high school sweetheart (my lack of two biological legs never was an issue for him), and we have two wonderful teenage children who have grown up with an added understanding and compassion for people who are different. I have my own marketing and design firm where I am a creative director and writer. I’m a firm believer in the philosophy of Friedrich Nietzsche, “That which does not kill us makes us stronger,” along with my mother’s favorite saying “Everything happens for a reason.” My son was born with a life-threatening heart defect. Although he has café au lait spots on his skin, doctors do not believe his heart condition was related to my pseudoarthrosis or underlying NF. I truly believe that all my years of being in hospitals and interfacing with medical personnel gave me the strength and comfort to see him through two successful open-heart procedures.
Facebook and other social networks are so valuable in connecting people and sharing support. The experience for my parents would have been so different and perhaps easier if they had been able to speak with other parents going through the same experience and garner support. I try to let my parents know that I have a great life despite what I went through as a child (and maybe even because of it), but I think they still harbor silent feelings of guilt.
Because the condition is so rare, I never met another person with pseudoarthrosis until I found a Facebook group. Being a pseudoarthrosis “survivor” and amputee is just a small part of who I am, but it has influenced every aspect of my life and has given me a perspective of gratitude for the wonderful life I have today.
Written by D.K. 22.10.10