I was born with myelomeningocele spina bifida. For those who don’t know what the first part of that term means, it is the most severe type of spina bifida. My parents found out about my condition pretty early in my mother’s pregnancy. Doctors had warned her that there was a good chance I would not live a couple days past birth and, if I did, I was going to be completely dependent for the duration of my life, as well as non-verbal. At only hours old, I was rushed into surgery to repair my spine.
By nothing short of a miracle, I lived beyond doctors’ expectations. Determined to prove the doctors wrong, my parents encouraged me to walk, talk, and do everything as “normally” as possible. I ended up talking (A LOT), walking, and doing everything independently and “normally.” I had a pretty good childhood despite the spina bifida. I wasn’t as fast as the other kids in gym class and I walked a little differently, but it was no big deal.
As I grew, my family noticed that my mobility was changing. At around 11 years old, we decided to have my mobility evaluated. We looked at the options to, hopefully, regain my full mobility. Surgeries were done that were thought to have “fixed” the problem, but my lack of mobility still remained. At that point, I was using a walker full-time. Being that young and surrounded by other children who didn’t understand (and didn’t want to understand. Instead, they made fun of me), was so emotionally, mentally, and spiritually crushing to me.
As time passed, I was given more and more physical therapy to do, more doctor’s visits to sit through, more x-rays to hold still for, and it felt like I was at the end of the road for options. The words “wheelchair-bound” were used quite a bit and I was incredibly scared. We wanted more answers, so we were referred to a neurosurgeon, Michael Partington, M.D., who worked at Gillette Children’s Specialty Healthcare. I found out that Dr. Partington worked alongside the doctor who cared for me as a newborn (I was born in Colorado, so this was mind-blowing). He instantly put me at ease when he told me that there were other options that could be explored.
He suggested that we try a baclofen pump, which is normally used for patients who have cerebral palsy. Due to my circumstances, he thought it would be helpful for me. He made it clear that, with recovery, it was ultimately in my hands with how hard I worked at my physical therapy after the procedure was over. The surgical staff at Gillette was amazing. Typically, people don’t remember what goes on before their surgeries, but this was a rare case where I still remember to this day. The nurse who was in the operating room held my hand as I fell asleep and told me everything was okay—that was something I never had experienced before.
My recovery after the surgery was intense, but the nurses at Gillette were so incredible. They needed to be in so many places at once, but they took the time to be so attentive, and didn’t treat me like another name on a chart. After I recovered from the surgery, I spent three weeks as an inpatient at Gillette for physical therapy. The physical therapy team was incredible. They made my exercises fun and celebrated every milestone I had in the process of learning how to walk again. I went into those three weeks using a walker and barely able to keep up with anyone. I left walking with forearm crutches and racing my mom to the car.
Since then, I performed in my high school’s show choir, did some work with acting, was very successful in college, went on to become a hair stylist, and am now happily engaged. I would not be in the position that I am in now without the care that Dr. Partington and Gillette Children’s Specialty Healthcare provided me.
I tell anyone who has a disability: never let anything stop you! A disability doesn’t define you. It's how you fight the challenge that defines you.
Photo top left: Amiranda with her family. Photo bottom right: Amiranda as a baby.