Allow me to back up and tell the story, though I’ll apologize now, because it’s a long one, even though it only covers several months. In late July 2014, I thought I saw Girl Child limping as we walked across a parking lot. I asked her if she hurt something, and she said no, and went on walking seemingly normally. Several days later, she was running around outside with our neighbor girls, and our neighbor noticed a funny hitch in her step. I asked her to walk in front of us, but she walked just fine. No hitch. No limp. But several minutes later, after going back to playing with the girls, and once she was no longer self-conscious about it, I saw it too.
As we walked home, I was walking behind her, and I noticed that her right shoulder blade was sticking out noticeably in a shirt that was tighter than she typically wore. I began to worry, thinking something was broken. But how could she have broken something without knowing it? I pulled up her shirt and saw a huge hump in her lower left back along with that eerily prominent right shoulder blade. She looked crooked. I told her to stand up straight, and she said she was. But she was leaning to her left, her right shoulder sitting higher than the other. The worry turned to panic, as I let slip, “Oh my God, what’s wrong? Something’s wrong,” and unfortunately my panic caused her to become afraid and tearful.
Something clicked in the dark recesses of my mind. This must be scoliosis. Scoliosis is fixable. Right?? Then a snippet of a half forgotten conversation with my mother-in-law from probably 15 years ago bubbled up. My sister R.’s daughter A. had to have rods put in her spine because of scoliosis. Did this run in families? I emailed my mother-in-law, and she wrote back that yes, her sister’s daughter and granddaughter had it and needed surgery; she had it, though exercises in gym class took care of it for her; and her father had had it. I took a picture of Girl Child to compare online, and it quickly became clear this must be scoliosis.
Girl Child had last gone to her pediatrician in March 2013, and her doctor had screened her for scoliosis at the time and found no issues. But she wasn’t actually due for another well visit until October 2014, because we’d gotten off our usual well visit timing. I immediately called and got her an appointment for 3 weeks later, the earliest I could get her in. Meanwhile I had world class tearful freak outs to DH, my sister, and cousin, and I’m not generally a tearful kind of person. I started looking back at pictures from the past year, and it looked to me that Girl Child’s shoulder started dropping in the fall of 2013, probably 6 months after she’d been screened by her pediatrician. And she’d occasionally complained of her back hurting over the course of the last school year, but she’s a middle schooler with tons of books and binders in her backpack, so I hadn’t thought much about it. Maternal Guilt was overwhelming; how could I have missed it that long?? I watched her at band concerts sitting with presumably good posture, though in pictures, you can see one shoulder dropped. I had watched her swim in swim class over the summer, thinking she had a beautiful clean line in the water, when all along her spine was twisted up. The answer to how this went unnoticed, which still doesn’t entirely assuage my inner guilt trip, is that at 11 years old (at the time), we don’t bathe and dress her, so we don’t see her naked hardly at all, and shirts and winter coats can easily hide things like that. A gradual change over a year or 18 months when you see someone every day doesn’t necessarily register. What’s more, the schools in our state no longer do scoliosis screenings, so people don’t necessarily even think about scoliosis anymore, unlike decades past when families would get letters detailing the results.
At our pediatrician’s appointment at the beginning of August 2014, she looked at Girl Child and said some cases of scoliosis are “wait and see” cases, mild enough to not worry about, but that hers was significant and required an xray and referral to a spine doctor. She scheduled the appointment for us–2 months out, though on a waiting list for an earlier appointment if possible–and sent us for an xray that we would need to pick up to take with us to the spine doc appointment. The report the radiologist sent to our pediatrician that day lacked a measurement of her curves, but it did say she had “marked curvature.”
Now, I’m a researcher. Not in the sense of running scientific studies, though I’ve done that, too. No, one of my big coping mechanisms is to research everything I can about a problem. Knowledge comforts me, even if it’s knowledge I don’t necessarily want to have to face. So I did a lot of research in a short time. I found that the most common form of scoliosis, Adolescent Idiopathic Scoliosis, as the name implies, shows up in adolescence when kids hit their growth spurts. It’s a spine deformity marked by abnormal side to side curving and twisting of the vertebral column. It can present as a C-curve, with a single angle of curvature, or as an S-curve with two angles. Around 2-3% of adolescents have some level of curvature of 10 degrees or greater, but only 20% of those kids need some kind of treatment for it–0.3%-0.5% of total children . The number of kids needing surgery for it is even smaller. For reasons unknown to medical science, girls are 8 times more likely than boys to progress to a point where treatment is needed. “Idiopathic” means unknown. Despite scoliosis being one of the oldest documented deformities, stretching back to ancient times, we still don’t know what causes it. 30% of scoliosis kids have a family history of it, but the actual cause and mechanism by which the spine starts curving remains a mystery.
There are really only three options for treating scoliosis, depending on the severity: wait and see, which includes stretches and exercises that don’t have any actual studied effects; for moderate curves back braces are used, though they don’t actually ever correct scoliosis, only keep it in check as the child grows; or surgery for the worst cases, requiring steel or titanium rods and fusing multiple levels of the spine. We desperately hoped Girl Child’s case would only need a brace, but looking at her back, it was hard to believe the kind of curvature we saw would be something she’d be expected to just live with into adulthood. Still, we had hope. And then we picked up the x-ray.
Knowing we needed it to take to the spine doc appointment, I picked it up to have on hand in case we were able to get an appointment earlier than 2 months away. Looking at the files on the cd, they were in a format not readable by typical image programs, but that night after the kids were in bed, DH was able to find a program that could display the image for us. And this is what we saw:
You don’t have to be a radiologist to know that’s bad. No one’s spine should ever look like Harry Potter’s lightning bolt scar. No one’s ribs should be vertical. Knowing then that we would be looking at surgery, we were scared. We resolved that I would start calling the spine center’s office in the morning to try to get an earlier appointment, but I worried they would simply write me off as an overly worried mom. We didn’t sleep that night. The next morning, Girl Child asked if we’d gotten the image viewing working to see her x-ray, and we told her we had. We showed her, and she said, “Huh..that looks kind of scary,” but she kind of shrugged it off and headed out to the bus. DH told me he downloaded the x-ray image onto his phone and that he planned to go down to the spine doc’s office and show them in an effort to get worked in sooner. A picture’s worth a thousand words, right?
And it was. When DH showed the image to the front desk nurse, she had to pick her jaw up off the desk before she asked if she could take his phone and go show the doctor. She came back out a minute later and said he’d see us that very day at 1pm. We were simultaneously relieved and terrified. If he was working us in that day, we could quickly get answers and a plan, but it also meant the case must be every bit as bad as we’d feared when we first opened that image….
(To be continued…)
