I’ll never forget the moment in early 2009 when I heard the words “three white lines.” It was at my 18-week ultra-sound. I learned that a girl, my sweet Isabella, was coming into my life. I was thrilled! A girl who might look like me, will she have her dad’s blue eyes, the blond hair that runs in both of our families? Then a scary thought entered my mind, will she have my scoliosis?
I was 13 when I was diagnosed in 1983. My curve was more than 50 degrees. It was too late for a brace. Untreated, the scoliosis would affect my heart, my lungs, and other vital organs. My parents had no choice really, I had to have spinal fusion surgery. The now obsolete Harrington Rod was implanted in my spinal column during an eight-hour surgery at the Children’s Hospital of Pittsburgh.
I don’t remember the first week, I was sedated with a feeding tube and a catheter. It was vital I did not move. Around day 8 in the hospital, I was carefully removed from my bed and a cast was placed on my torso. It went from just under my armpits to my hips. It was heavy, hot, and hard to hide. It would stay there from October until the following summer.
A week later I left the hospital and was home schooled for a month. Then it was back to class. I was almost 14, I had braces on my teeth, a bad eighties perm, and glasses. And of course, my cast. There were no tight Jordache jeans for me, I needed an elastic waist so my pants would fit over the cast. It wasn’t a good look.
My classmates made it pretty easy for me though. I don’t recall being teased. I remember getting in trouble for packing the school elevator with more classmates than it was designed to carry. I had an elevator key; I couldn’t climb stairs.
My friends signed my cast, one boy in my homeroom even drew boobs on it. My mom wasn’t thrilled about that. It wasn’t a terrible year; many children have and continue to experience far worse. But it was traumatic for me and my family. It is not something I ever wanted my own child to experience. Because scoliosis is genetic and more common in girls, I’ve worried about this from the moment I learned I was having a girl.
As my daughter approached her tween years and began to grow taller, I was holding my breath and watching for signs that her spine was not straight. Was I seeing them or being paranoid? A visit to Children’s Hospital of Philadelphia confirmed my fears in early June. Isabella has scoliosis. Tears filled my eyes as we looked at the x-rays.
Because her dad, pediatrician and I have been watching for it, Bella’s scoliosis was diagnosed early. Her curve is just in the range where treatment is needed. But she has much growing left to do and her doctors believe it will turn into a severe case, like mine, if we do nothing.
Our options were laid out, put her in a brace for 16 hours a day for the next three years or explore a relatively new treatment called Vertebral Body Tethering. It uses a strong flexible chord to straighten out the spine during the growth process. After extensive research, conversations with parents with a child who has had the procedure and long discussions with Bella, we decided tethering is the best option. She’s scheduled to have the surgery in early November.
The surgeon who will perform it looked me in the eyes and said, “Your experience with scoliosis was life changing, your daughter’s will be a bump in the road.” This gives her dad, her older siblings and I some peace of mind. But we’re nervous and scared. We go from taking comfort in the fact that it’s still months away to wanting to get it over with.
My sweet Isabella is being incredibly brave and has given me permission to document her journey for Phillytweens.com. She wants other families facing a scoliosis diagnosis to know about this option and what to expect. She knows she’s in good hands at CHOP and that she has overwhelming support from her family and friends.
We’re thankful we can share our journey on PhillyTweens.com.