Oct 2018 The Daily Orange
Like many of her seventh grade peers, Giovanna Deuel has braces and neatly-braided hair, curious eyes and a big smile. If she turns her head slightly sideways, you can see her black headband with a small, rectangular box attached on both sides. It’s a BAHA — a bone-anchored hearing aid — which Deuel has worn since she was four months old.
Just after giving birth to Deuel at Crouse Hospital in Syracuse, her mother, Nicole Penizotto, noticed something different about her newborn daughter, she said. She asked doctors to take a look, but they weren’t able to complete a hearing test. Deuel didn’t have the ear canals for it.
When Penizotto got home from the hospital, she took it upon herself to diagnose Deuel. After researching her symptoms, she came to the conclusion that her daughter had microtia and aural atresia — rare congenital deformities in the ear that lead to conductive hearing loss. “I was confused, I wasn’t sure what was going on,” Penizotto said. “I didn’t know what to think about it or what to do about it.”
With an underdeveloped external left ear and the absence of external auditory canals in both ears, Deuel hears most sounds through her BAHA, which transmits sound waves through vibrations to her skull. Growing up, Deuel said she didn’t always understand why she had different teachers or sat in front of the class. Neither did other kids at her school. “They weren’t really aware (of my hearing disability), they didn’t know, they thought I was just, like, a regular,” Deuel said. Three times a week, Michelle Chapman, a teacher of the deaf and hard-of-hearing at Deuel’s school, sits down to help her with schoolwork. Once a month, an audiologist visits the school to help ensure her seating in the classroom and that background noises don’t interfere with her learning. Before every class, she brings a Bluetooth microphone, charged the night before, for her teacher to wear so she can hear every word in class. Chapman said she “could never ask for a better student.” She works with Deuel to not only improve her comprehension and vocabulary skills, but also build her self-advocacy skills and confidence. When she’s not in school, Deuel plays softball, which she’s been doing for five years. She can’t wear hearing aids with the helmet when batting and running bases, so she communicates with coaches and umpires verbally, while reading their lips.
The 12 year old is undaunted by her hearing loss — which is part of what’s made her a known figure at the HearStrong Foundation, a Syracuse-based nonprofit aiming to shift social stigmas surrounding hearing loss. “I want to be an advocate,” Deuel said. “There are so many people in this world that are going through what you’re going through and I want you to know that.” Ed Keller, president and founder of HearStrong, said he wants people to stop focusing so much on hearing loss and treating it like a disability, but instead treat it as a form of empowerment. Since its founding in 2013, HearStrong has helped share the stories of more than 180 Champions across the world. The foundation’s newest project, HearStrong Visionary Fund, which launched in September, looks beyond a person’s hearing loss and supports their dreams. Aside from daily challenges, hearing loss can have an effect on a person’s cognitive ability, quality of life, social relationship and overall self-confidence, Keller said.
In spring 2017, Deuel decided she was ready to undergo microtia repair surgery, which included a series of procedures to recover the appearance of her undeveloped left ear. “It’s very worrisome,” Penizotto said, taking a deep breath. “No matter what your child is born with, or what trouble your child faces in life, they’re perfect to you.” The two have traveled to New York City more than 20 times for doctor appointments and treatments. Deuel chose a rib-graft method for the repair, which takes cartilage from her rib and plants it into a skin pocket under the scalp to give the appearance of an ear. Deuel has undergone three surgeries so far, two of which took more than seven hours. Penizotto said those were the longest hours of her entire life. But these experiences changed her perspective on life, she said. Deuel embraces hearing loss as a part of her — it’s made her “as strong and determined” as she is, Penizotto said. “It’s not the challenges that define us, but it’s how we respond to those challenges that defines our true character,” Keller said.