In 2015, I first started asking Grace’s doctors in the UK whether they thought she was developing scoliosis. They took the picture on the right and said no. Knowing what I know now, she actually already had quite a significant curve. Flash forward to moving home to Florida and meeting her orthopedic surgeon at Nemours for the first time. Her first measurement was around the 90º mark and it held there for a few years.
After seeing many Rett girls having bad experiences with spinal fusion surgery, we decided that we weren’t going to do this surgery for Grace. I was so naive about what life dying of scoliosis would actually look like. It felt like an impossible choice. The surgery itself was just unfathomably savage when I watched it on YouTube. I was afraid. Afraid she wouldn’t recover. Afraid she would have irreversible nerve damage or her body would reject the hardware.
About 4 months ago, around Christmas, I was cuddling Grace on the couch and I sat her up. I was shocked to see the full extent of her scoliosis from a vantage I hadn’t seen it in years. Her little body had suddenly changed. I knew this was a possibility. I knew that sometimes, a curve will hold for years in a position and can suddenly worsen. I made an appointment for a new xray and we learned that her spine was now 120º and her ribs were resting on her hip bone. Although we were trying to avoid pain, she was in pain already. It felt like the decision had been made for us.
I wondered how much of her constant sleeping was just due to the exhaustion of holding up her body, enduring pain all day and the difficulty of breathing.
Surgery was scheduled for 8 weeks later. There are SO many appointments the lead up to a surgery like this. Including a Covid test which, to my shock and surprise, came back positive.
Grace had Covid. Grace, who never left the house, was only cared for by medical professionals and close family who all tested negative. It’s a mystery still. Nonetheless, her surgery was cancelled and her nurses had already taken the week off. So that week was pretty hellish and we waited 2 more months for surgery to be rescheduled. I took her to the same pre-op appointments again and she tested negative for Covid.
Here are some quick facts:
In total, she has over 32 screws, 2 titanium rods and her spine is anchored to her pelvis.
The metal weighs about 7 lbs. She grew about 3 inches.
Before the surgery her S-Curve was about 120º and after, it’s about 60º. While some kids become perfectly straight, the surgeon said her spine was very stiff and couldn’t be straightened all the way. I wasn’t anticipating that possibility. I didn’t realize there was a chance she couldn’t be straightened all the way.
The biggest surprise was that she was sitting up in her chair the day after and the first week was relatively painless.
The second biggest surprise is that while other kids can still be in the hospital weeks later, Grace went home after 48 hours. Her recovery has been so much better than I expected, but still very hard.
The thing I didn’t expect was how painful week 2 was.
The greatest joy is seeing her sitting up straight and not tipping over all the time!
While we had been afraid to do this surgery because of some bad experiences we had seen over the years, I am SO glad we took the dive. Grace is happy and smiling EVERY day since completing her recovery (which only took 3 weeks). She’s more engaged, sitting up so tall and doing really really well. I’m so grateful to everyone involved in getting here there in the end.