Juvenile Idiopathic Scoliosis. That was the diagnosis given to my then 8 year old daughter last January. In short, it means that she’s young (under 10), she exhibits an abnormal amount of spinal curvature, and there’s no identified cause (aside from some bad luck).
Emilia’s x-rays indicated an S-shaped curve with 26 degrees at its largest curvature. To look at my healthy, active daughter, you’d never notice. However, on an x-ray, 26 degrees is quite alarming.
We learned quickly that the goal with scoliosis is to minimize further curvature; thereby, preventing surgery. The typical solution: a brace. And, given her young age, it could be up to 5 years of wear.
Because Emilia was right on the edge of “bracing,” we had a decision to make: do we brace her now or wait and see? She’s our daughter and we want to do everything we can to support her. We definitely want to prevent surgery but we also want her to live an active life doing all of the things she loves: swimming, skiing, etc. How could we be sure wearing a brace will actually prevent curve progression? Does a relationship between brace wear and non-progression even exist?
A colleague, Meredith Griffith, found a particular study conducted at the Texas Scottish Rite Hospital for Children and reported by The Journal of Bone and Joint Surgery. A sample of 100 patients with curves between 25 and 45 degrees were each fitted with a brace containing a heat sensor for measuring the number of hours of brace wear. Once all patients reached skeletal maturity, doctors compared the number of hours of brace wear with the patient’s curve progression. Specifically, doctors were interested in a curve progression greater than or equal to 6 degrees as an indicator of brace treatment failure.
Based on this study, 82% of patients who wore the brace for more than twelve hours per day experienced successful brace treatment (<6 degrees of curve progression)! This result was more pronounced in patients who were less skeletally mature at the time of the study—indicating that earlier exposure to brace treatment offers a higher chance that the patient will experience minimal to no curve progression. It is also notable that as the hours of brace wear decrease, the rate of successful treatment decreases: those wearing a brace 7 to 12 hours per day showed a 61% treatment success rate, while those who wore the brace fewer than 7 hours per day showed only a 31% success rate. Ultimately, doctors found that a strong relationship—statistically speaking, a strong positive correlation—between hours of brace wear and non-progression exists. So as the number of hours of wear increases, so does the probability of non-progression, and vice versa.
The saying goes: “Correlation does not imply causation.” So although we cannot assume that wearing a brace for 24 hours each day throughout childhood development will yield no curve progression, we can assign probabilities or likelihoods to non-progression based on the hours of wear. Understanding the likelihood of non-progression will equip parents to make valid, data-driven decisions.
Emilia, being our level-headed, data-driven child, made the decision on her own: “Sounds like we need to brace it,” she told the doctor. I love that kid.
And so we did. Emilia wears a brace about 20 hours a day. She manages her time in it and it hasn’t slowed her down. She continues to be on the downhill race team, the swim team, and does everything else a 9-year-old does. Our adventure with scoliosis is a marathon and not a sprint, as our doctor would say. She has days where she doesn’t get a full 20 hours, but we manage and she always gets at least 12 hours of wear. She has a great attitude about it and wonderfully supportive friends.
And the results? At her 6-month checkup, her curvature measured 22 degrees. While there is measurement variation, the reading does indicate that it didn’t progress. As our spinal surgeon told us “No indication of progression and the rest, well, that’s just gravy.” That’s fancy doctor-speak for “We’re going to Disney to celebrate!” And we did.
Good Job, Emilia! You are a rock star!