Growing up, sisters will often share many things — and not always willingly. But it’s not often they will end up sharing the same condition, one that keeps them stuck in a rigid and uncomfortable back brace for most of the day. But then again, April and Mary Miller are not your average sisters.
The Miller sisters were both diagnosed with idiopathic scoliosis at the end of their fifth grade years. April, the oldest sister, was diagnosed in 2011, while younger sister Mary’s diagnosis came in 2013.
One diagnosis, two separate journeys
Scoliosis is relatively common, with idiopathic scoliosis being its most common form. The condition affects about 1 in every 40 people and tends to occur more frequently in certain families. For families with a history of idiopathic scoliosis, a family member’s risk of having the condition is increased by 20 percent. But once an individual is diagnosed, the statistics begin to fade and treatment paths can vary greatly.
Scoliosis is a condition in which a child’s spine has an abnormal side-to-side curvature, often shaped like an “S” or a “C.” The spine may also be rotated or twisted, affecting positioning of the ribs and forming a multidimensional curve. “Idiopathic” means that there is no known cause.
If a scoliosis curve quickly progresses to 20 degrees or more, it may require a patient to wear a brace for up to 20 hours a day — a tough task for any adolescent. The prescribed amount of time can often span multiple years, but for about 70 to 80 percent of patients, who stick to their treatment plan, their curve can be successfully stabilized. Unfortunately for the remaining 20 to 30 percent, even diligent brace-wearing may not prevent their curve from progressing to 40 degrees or greater, which often requires surgical intervention.
That outcome can be incredibly frustrating, especially if you’re two sisters who both wear their braces the prescribed amount of time, and yet only one of you ends up needing surgery.
So how do you handle it? Well, if you’re April and Mary Miller, the answer is simple: You help each other.
“They’re so unique,” their mom Lisa explains. “They support each other in everything they do.”
April’s story: Braced
When April, now 18, was diagnosed at the end of fifth grade, she was devastated. Entering a new school in the fall, she would have to face the reality of meeting new classmates while sporting her rigid Boston Brace.
“I felt like this was the end of the world,” she recalls. “I was going to school with new people and wondering what they would think about me. I was really worried about that.”
But her frustration served as motivation to ensure her treatment went as quickly as possible, making a significant impression on her doctor, orthopedic surgeon and pediatric spine specialist Dr. Michael Glotzbecker.
“April and Mary were both really committed to the treatment — they really bought into it,” says Glotzbecker. “Both sisters were very mature and made great decisions.”
The patient-physician relationship would remain key for both April and Mary, as the support they had from Glotzbecker helped them over their years of bracing and treatment.
“He was the most supportive doctor I’ve ever had,” says April. “The way he interacted with us was way different from any other doctor. It seemed like he really cared about what we were going through.”
By the fall of 2015, April had improved enough to only wear the brace at night, and by that summer she was finally able to stop wearing it altogether. As a tennis and track athlete who remained active despite her bracing schedule, this was a welcome feeling of freedom.
Mary’s story: Spinal fusion surgery
When Mary, now 15, was diagnosed two years later, the Miller family was prepared. Glotzbecker had made sure to check Mary for signs of scoliosis during April’s visits to Boston Children’s.
Despite her diagnosis, Mary was able to remain positive, “I wasn’t really as upset as April had been, because I had already seen her go through it. I knew that it wasn’t irreversible.”
With both girls now sharing the same condition, April could provide Mary with advice from her first two years of wearing a brace. “I really encouraged her to wear the brace as much as possible,” says April. “I knew that she probably didn’t really want to wear it, but I also knew that I was getting out of mine really soon, and she would have that same experience if she did what I did.”
But scoliosis isn’t always fair. Even for a perfect brace-wearer, it isn’t guaranteed that your curve will be stabilized and you’ll avoid surgery. Mary’s curve became progressively worse, despite Glotzbecker describing her as “an exemplary brace-wearer and patient.” Even the advice and support of her sister wasn’t enough to correct the curve.
“I think her sister’s support was probably very key to Mary’s success at wearing the brace, even though she ultimately needed surgery,” Glotzbecker says. “This family exemplifies the way bracing should be approached.”
This is the most common surgical procedure for scoliosis. It combines fusion of vertebrae and implementation of rods to straighten the curve. At Boston Children’s Spinal Program, a team of pediatric spinal specialists performs these surgeries. Spinal fusions are a significant part of the over 300 spinal surgeries our orthopedic specialists perform each year.
In May of 2016, almost a year after April had been given the news she no longer needed to wear her brace, Mary had spinal fusion surgery to correct her scoliosis. “I was actually kind of excited for it,” she says. “I wasn’t really scared at any point, I just wanted the surgery to be done with and get onto recovery.”
Mary’s surgery was a success. With a high-tolerance for pain and a strong desire to finally be free of the brace, her only complaint in recovery was the temporary hold on her participating in sports, given that she felt perfectly fine to compete.
A common path forward
With bracing and surgery behind them, both sisters now have ambitions of a future in nursing, and their experiences with their own conditions have only served to motivate their passions.
April will be attending Curry College in the fall as a student in the nursing program and a key part of the women’s tennis team. Her experience at Boston Children’s has stayed with her as she envisions her path forward.
“Her college does internships at Boston Children’s, so you know where she’s hoping to end up,” Lisa laughs.
Although the same condition led them down two different paths, April and Mary have been able to focus on what kept them close. “I think this experience helped us relate to each other,” April says. “Scoliosis definitely brought us closer together.”
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