Hanna Vsetecka

Hanna shows her brace.

The day their 5th grader Hanna came home with a note from the school nurse was the day family life changed for the Vsetecka family of Fort Atkinson, Iowa.

In the note, the Turkey Valley Elementary school nurse explained that during a routine physical she detected uneven shoulder alignment in Hanna. It was suggestive of scoliosis, the nurse observed. Scoliosis is an abnormal curvature of the spine that tends to run in families and occurs in approximately 2 in every 100 people. No one knows the cause. But many effective treatment options are available — and the earlier treatment begins, the better the results are. Because of the importance of early treatment, the nurse urged Hanna's parents, Joe and Lisa, to have Hanna evaluated at once.

Hanna's Family

It was news to Joe and Lisa. They hadn't thought anything of the barely-discernable protrusion of one shoulder. Hanna had no pain or disability. In fact, she was an active athlete who enjoyed swimming, softball and volleyball. Even so, they followed through on the nurse's recommendation by consulting their family doctor. He referred the family to Mayo Clinic in Rochester, Minn., a 90-mile drive north. "And from there, it just took off — everything happened so fast," recalls Lisa.

Each brace is made from a mold of the patient's torso.

Bracing for the best
Through it all, the Vsetecka family braced for the best. Hanna is now 14 and in 8th grade. Since 6th grade, Hanna has been wearing a spinal brace for 22 to 23 hours out of every 24 hours. She has another 12 to 18 months left to wear the brace because successful treatment requires bracing until childhood growth plates have finished growing. She's outgrown her first brace, and in January 2008 was fitted for a second brace — this was another time of powerful change. But it's positive change, this time, a time of confidence in a healthy future because Hanna's Mayo Clinic team believes Hanna's treatment is on a successful course. "Mayo has just been great," her mother says. "Treatment is going amazingly well, and we can't say enough about all the great people involved," her mother says. "Everyone, doctors, prosthetic lab specialists, nurses — every interaction has been just great."

Thanks to the bracing, Hanna's spine is steadily achieving correct alignment. This means she no longer faces the complications of scoliosis in adulthood, which can include chronic back pain and impaired breathing due to ribs deformed by the spinal misalignment. Explains Dr. William Shaughnessy, Hanna's doctor: "In the old days, bracing was much more restrictive, and I think too many people have an outdated concept of what bracing is. That, unfortunately, may discourage them from getting the proper treatment early, when correction can most easily be achieved. But Hanna is living proof of how much better and more comfortable bracing technology is — it hasn't slowed her down a bit." Adds Hanna: "The beginning was the hardest; I was really scared because I didn't know what to expect. But just when I was getting evaluated for a brace, I met another girl, older than me, in the waiting room at Mayo — and she was just finishing her bracing. She was so happy and healthy! She told me it wasn't really a big deal — and that made me feel better." Notes Hanna's mother: "The decision to brace was overwhelming at first. And the first days of the brace were really hard. Now, with everything going so well, we'd do it again in a minute."

But it was a tough parenting call. At first glance, bracing seemed too severe and too confining to bear for an active child on the cusp of adolescence. Hanna thought so too. Of the many questions roiling in Hanna's mind as she learned about the requirements of bracing therapy, the most persistent were the most developmentally typical for a pre-teen: How can I have a normal life encased in plastic from torso to waist all my waking hours? What will the other kids think of me?

Hanna's X-rays showed a clear need for correction.

The decision to brace
Not all cases of scoliosis require bracing treatment. While Hanna was in still in 5th grade, Dr. Shaughnessy followed a conservative course of vigilant observation. Hanna had check-ups every 4-5 months during which x-rays and measurements monitored the growth pattern of her spine. The initial consult confirmed the school nurse's observation and Hanna received a diagnosis of scoliosis.

But within a year, the test results indicated steady progression of the abnormal curvature — an indication that bracing was needed. Some cases of scoliosis are so slight they do not severely affect health, limit activity, or adversely affect appearance. Some cases are so extreme — especially if lung compression is severe — that surgery is the best solution. Frequent monitoring enables physicians to discern which treatment course to take. "Hanna's just kept getting worse," Hanna's mother says. By 6th grade, the progression of the abnormality suggested Hanna was among those that needed bracing to avoid severe problems with breathing, mobility and deformed appearance in adulthood.

"The pictures Dr. Shaughnessy showed us of possible outcomes of untreated cases like Hanna's convinced us," Lisa explains. "Even though we were overwhelmed, we made the decision to brace her in about 15 minutes, knowing what the possible consequences for her could be if we didn't act."

The bracing process
Modern bracing starts with a visit to the Mayo Clinic scoliosis clinic molding specialists in the Prosthetics Laboratory. In a prodedure 30 to 40 minutes long, two specialists made a plaster mold of Hanna's torso, cutting Hanna out of it once it dried. From that mold, they made the actual plastic brace Hanna would wear 23 of 24 hours every day until her growth spurts were complete and bones were in adult alignment. Hanna returned to Mayo 1 week later to have her brace custom fitted through careful placement of straps and buckles. Correct fit is crucial. It is a process, not a single act achieved in one visit. Hanna wore the brace for 1- to 2-hour-long intervals before her next appointment just to make sure she could make a full report on how it felt and fit. This introductory period gave Mayo specialists the data they needed to perfect the adjustments that would support and guide proper alignment of Hanna's spine. This early phase of encasement in a brace was the most difficult period for Hanna. Says Lisa: "It was pretty traumatizing." But once she met the girl in the Mayo waiting room who was just completing her bracing, everything changed. "I could see how happy she was, so I believed her when she told me it wasn't really a big deal," Hanna says.

Tips on living well with a brace
The most important advice the girl gave Hanna for embracing her brace included:

• Know that the first day is the worst — and that you'll get through it.
• Each day, life with a brace gets better. You'll reach a point where you don't notice it.
• A lot of kids won't even notice it either.
• Wear sweat shirts and sweat pants if you're really self conscious about the brace being apparent.

To this list, Hanna adds the following tips for making peace with a scoliosis brace:

• Know that it actually does become comfortable.
• It isn't an obstacle to normal teen activities — social and athletic.
• Wear regular clothes. After the "sweatsuit" phase of brace-concealing fashion, you'll probably want to go back to your normal clothes and that's fine.
• Be prepared for one aspect of your appearance that may draw attention: "The brace kind of sinks in at the belly, so it sort of looks like your anorexic," Hanna explains. That can attract misguided concern, so be prepared for it and to explain the brace's effect on your shape.
• Play sports. "It helps you feel better — and more normal," Hanna explains.

The only times Hanna took the brace off were to shower, to stretch, and to play sports, including participating in swimming workouts and meets. "I told all my coaches about it and it's no big deal," Hanna says.

Today, Hanna's brace is such a healthy part of her that she needs no encouragement for following the strict bracing regimen. Says Lisa: "There are times during the 1-2 hours out of 24 she is allowed to have the brace off that she'll say, 'I think I'll put my brace back on, because my back feels better with it."' Teasing remarks turned out not to be an issue at all. Adds Hanna: "I was really worried that people would say something, but actually, most people didn't seem to notice until I told them about it."

Exhibit Board about Scoliosis and its Treatment

A blue-ribbon brace
Inspired by the waiting-room wisdom that Hanna received from the older scoliosis patient, Hanna wanted to join in the spirit of educating people — patients and the public — about scoliosis. Her involvement in the local youth service and education group, 4-H, was the ideal platform for her message. For the annual service project, she prepared an exhibit board about scoliosis and its treatment, complete with a X-rays of her own spine, pictures of her brace — and of her inside it. "It made me really happy just to do it, realizing how much I had learned, and how much better off I was — and then to win a blue ribbon for it was really great. The judges and everybody were so interested in it, it made me think I'd really contributed something," Hanna says.

Gayle Jirak was one of the leaders of Hanna's 4H group, who call themselves the "Far-out 4s". Says Jirak: "In the old days, most 4H projects tended to be about agriculture life, but now there's a real emphasis on encouraging kids to explore different things. We encourage kids to do projects about what they know — and Hanna did a really great job teaching us all about scoliosis. She really expanded our understanding of what it means to be a helpful community member by teaching us about a health problem and its treatment. It was so inspirational."

As far as the Mayo Clinic scoliosis care team knows, Hanna's experience is the first to make its way to 4H — and they are grateful it did. "The more people know about the conditions and the successful treatment options, the better off patients will be," Dr. Shaughnessy says.

Messages like Hanna's help demystify scoliosis treatment, correct outdated stereotypes, and make it possible to brace for the best — even for a blue-ribbon future.