Spending puberty in a shell

Story highlights

  • Photographer Julia Cybularz documented her young niece's struggle with scoliosis
  • Hannah had to wear a restrictive back brace for 23 hours a day

(CNN)Julia Cybularz's niece, Hannah, was only 9 when her body started turning against her.

Hannah had idiopathic scoliosis, which curved her spine in an extreme way. Hoping to avoid surgery, she agreed to wear a restrictive brace under her clothing for 23 hours a day.
It was no surprise when Hannah asked Cybularz, a photographer, to accompany her to the first brace fitting. The two already had a special bond, and now they were connected by something else: Cybularz also has scoliosis, but she never had surgery and refused to wear a brace as a child.
    Cybularz says Hannah was terrified at the brace fitting, but she agreed that her aunt could bring her camera along -- just in case.
    From that moment, Cybularz's photo project "Breaking the Girl" grew organically. It documents Hannah, her braces and the progression of her condition.
    "It opened a discussion that led to an understanding and processing of her medical condition as well as her personal feelings," Cybularz said. "Her incredible courage going through that and her trust in me made me feel responsible."
    Photographer Julia Cybularz
    Cybularz has a passion for portraiture and working with her family on photography projects. To her, this seemed like a way of showing how people make it through trauma.
    Most kids going through puberty only have to worry about outgrowing their clothes, but for Hannah it meant going in for another brace fitting every nine months. She wore the brace religiously, only removing it for an hour each day to take a bath. Apart from a small tantrum on the first day of wearing the brace, Hannah handled it with great maturity, Cybularz said.
    Hannah kept it a secret from her classmates. She started wearing baggy clothes and high-necked tops. She would go to the nurse's office to change before gym class so that no one would know about her brace or her scoliosis.
    But in 2013, Hannah received devastating news. The brace she had worn so faithfully had not only failed in preventing the progression of her scoliosis, but it had actually deformed some of her ribs.
    Hannah's scoliosis was aggressively curving her spine into a 70-degree S-shape. The only option would be a surgery that fused her spine with two titanium rods, both to correct her spinal curvature and protect her vulnerable heart and lungs.

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    Because she would have to miss six weeks of her first year of middle school, Hannah had no choice but to tell people about her scoliosis and upcoming surgery. At home, Hannah had the support of her family, who always made sure that someone was with her as she recovered.
    After her recovery, Hannah shared notes from a journal she kept during the years she wore a brace. She revealed how much her aunt's documentation of the process had meant to her. It had been an empowering experience that helped her stay strong each step of the way. It also brought her and her aunt even closer together.
    To celebrate, they had a brace-burning party. Hannah created a playlist, they bought fireworks and officially "shed the shell."
    Now Hannah's back has healed beautifully, and she's entering her first year of high school in the fall.
    "She's finally coming into her own," Cybularz said. "It's been a process. She was closed for so long, hiding behind her brace. Now, she's finding new friends and has an interest in science and physical therapy. This experience has shaped her in such a profound way."