My parents weren’t familiar with the words Achondroplasia, short stature or dwarfism until I was born. Many people told them that I was not going to ‘thrive.’ Very little was known about my condition at that time, leaving them in the dark about what my future may hold. Saving every article and pamphlet she could get her hands on, my mother hoped for information and answers regarding my condition.
Beginning in my infancy, my parents found an orthopedic surgeon in Baltimore, MD who specialized in skeletal dysplasias. At the age of 3, I was braced for Kyphosis and from that point on we made a trip to Baltimore every year to monitor my progress.
As a child growing up, I was unstoppable. In my mind, there was nothing that I could not do. Swimming, softball, cheerleading and skiing were just some of my favorite activities. But as I got older, things became increasingly more difficult. When walking longer distances, I tired very easily and felt constant aching in my legs. Pain in my elbows and hips, which I ironically labeled as ‘growing pains,’ became constant. My lower legs were becoming severely bowed and my doctor immediately recommended surgery. Back then, the method was to shave away the part of the bone causing a bowed appearance. The thought of such a procedure didn’t sit well with me.
That is when we first came across the extended limb lengthening procedures on a televised segment of Regis and Kathy Lee. Two young boys were on the show with external fixators on their legs. Immediately, I was intrigued and wanted to know more.
Knowing that surgery was inevitable, we began to look deeper into extended limb lengthening. After several failed consultations with inexperienced practitioners, we found Dr. Paley, also in Baltimore, MD, at Kernan Hospital. At my first consultation, he explained that I was an excellent candidate for surgery and that several of the deformities that I suffered from would be corrected. That was all I needed to hear. The height and proportion were an added bonus. With all of the pros and cons weighed and full support from my family and friends, I opted to undergo the procedures.
My first operation was in June of 1998. I’d be lying if I said it was easy. The rigorous physical therapy was intense. Vigilance paid off and with only two instances of pre-consolidation and a few pin infections, my first procedure gifted me a new sense of independence and pride. Over the course of 6 months, my lower legs were lengthened 6 inches and beautifully straightened.
Wanting to ‘just go for it, ’I underwent the lengthening on my arms the following spring in 1999. What a piece of cake that surgery was compared to the lower leg lengthening. A mere 4 months later, I could rest my arms comfortably at my side and put my hands in my pockets – the ‘growing pains’ previously felt in my elbows were gone.
The final lengthening on my upper legs, the femurs, was by far the most difficult. During the lengthening phase I was non-weight bearing and confined to a wheelchair. Going from newfound independence to being completely reliant on others was not easy for the free spirited teenager that I was. But I knew that it was all for good reason. I spent my sophomore year of high school primarily being tutored at home. In the end, the positives outweighed the physical limitations and after 6 months the flexion deformity in my hip was gone and I had gained another 5 inches of length.
To this day, I will never forget the feeling of standing up next to one of my best friends for the first time, eye to eye. Or the moment that I sat in a chair and both of my feet touched the ground. You can’t put those moments into words but they gave true meaning as to why I chose to undergo the procedures.
When I first began the limb lengthening surgeries, I knew there was enormous controversy surrounding them. The Little People of America deemed the procedures cosmetic and claimed that those who chose to lengthen did it to blend in with society, ultimately wanting to change who they were. I held true in knowing that my motivation did not lie in becoming taller, blending in or changing who I was. My eyes and my heart were on my future. I was still going to be Kristen, the girl born with dwarfism. Nothing could ever change that.
Gradually, people are becoming less objective to limb lengthening and I believe it is because those of us who have gone through with the procedures continue to open up about our experience. Many times, parents of average height who have a child with short stature inquire about limb lengthening, wanting to pursue it for their child. One thing I always stress is that I made the decision to go through with the surgeries. My parents would have supported me either way. It requires commitment from both sides – everyone is in it together. The success outweighs the occasional pain and setback. It is so important for the individual undergoing the procedures to not only be fully committed but ready for it; to understand everything surgery entails. Limb lengthening isn't for everyone and that is OK.
Never in my wildest dreams could I have imagined that modern medicine would shape my life the way it has. Yes, I am taller, proportionate and straighter thanks to the procedures. It took perseverance, tears and strength. And for almost four years I was constantly in and out of the hospital. But the true immensity of the experience as a whole is nearly impossible to put into words.
When I was a little girl I would pray to God that I would wake up in the morning and things would be different. People would stop looking at me like I was an object of ridicule and accept me for who I was as an individual, not what I looked like. To say that my prayers have been answered is an understatement. Throughout the years I have crossed paths with people who have taught me courage, strength, compassion and how to love me for who I am. The entire journey has softened my heart. I have no regrets but immense gratitude for everything and everyone that this experience has gifted me.
When you face your illness or condition as a disability - it becomes a prison. When you acknowledge your illness or condition as an identity - it is a source of freedom. My name is Kristen and I am a woman with dwarfism who has undergone extended limb lengthening. Thank you Dr. Paley for using your gifts to help me make little, HUGE.