Pittsburgh-area deaf woman to share implant success story


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The most amazing thing about interviewing Emily Fustos on the phone was that it was occurring on the phone.

Consider that Ms. Fustos has been profoundly deaf since her birth 23 years ago.

But in 1992, at 2 1/2, she was the youngest person at that time to receive a cochlear implant at then-Children's Hospital of Pittsburgh. Such devices include an external receiver behind the ear to capture sound then transmit digital signals to a surgically implanted device in the inner ear, which stimulates auditory nerves that the brain eventually learns to distinguish as specific sounds and words.

Ms. Fustos of Hampton, whose initial implant was in her left ear, received one in the right ear at age 20 at the Hearing Center of Children's Hospital of Pittsburgh of UPMC. It further improved the depth and location of sound while allowing her to better enjoy music.

She stands as a success story in how cochlear implants allow people with serious or profound hearing loss to hear, thrive and succeed.

"Because I got the first implant when I was very young, I benefited from youth and the plasticity of my brain to take in a completely different signal from normal hearing and have the brain interpret it as sound -- meaningful sound -- and be able to develop language from that signal," Ms. Fustos said.

During the telephone interview, she never asked to have a question repeated and responded to each eloquently without hesitation.

Now seeking an audiology doctoral degree at the Vanderbilt University School of Medicine, she will speak during the Hearing Center Auxiliary's Casino Royale, 6 to 9 p.m. Friday at the Rivers Club, Downtown, to help raise money for educational programs and assist children requiring medical assistance for hearing aids and auditory care.

"I suggested Emily as a student speaker this year because she is such an exemplary person with her success with cochlear implants, and she is studying audiology to give back to hospitals and audiologists, and to help families, just as hers has been helped," said Ruth Ann Adams, who teaches children with hearing disorders and serves as an auxiliary board member.

Ms. Adams was Ms. Fustos' first teacher at 18 months, from her diagnosis until age 3.

Ms. Fustos was diagnosed with profound sensorial hearing loss at 18 months, but hearing aids didn't help. They amplify sound, but implants capture sound waves and bypass the impairment to stimulate the nerves.

After the first implant, she progressed steadily and entered mainstream education in middle and high school at her home school district of Hampton. Along the way, Ms. Fustos participated in community activities, Girl Scouts, soccer, dance and cheerleading.

"The biggest misconception is that people think they get the surgery and it's done," Ms. Adams said. "When you get a cochlear implant, that's when the work begins. It takes months and years to learn to listen, and it requires speech therapy. You have to know that a sound is present."

For example, if there's a knock at the door, she said, the person must realize a sound occurred. Then the person must try determining where the sound originated. When the person finally sees someone answer the door to allow someone to enter, an association between that sound and its meaning becomes clearer. The brain must be trained to interpret sound, as occurs naturally in those of normal hearing.

In time, the challenge is to distinguish more complex sounds, even in noisy settings.

Ms. Fustos' surgeon, David Chi, medical director of the Children's Hearing Center, said children 5 and 6 months old are receiving cochlear implants nowadays. "The main thing is, the earlier the better," he said. "You can still benefit later, certainly, but if it is implanted earlier, the better the performance and the outcomes."

Hearing loss affects 2 to 4 babies of every 1,000 births, making it the most frequent birth condition to occur, he said. Children's Hearing Center does 40 to 50 cochlear implant surgeries a year. He said Ms. Fustos' success with the more recent right-ear implant is more amazing because those auditory nerves hadn't been stimulated for 20 years.

"Obviously, I'm humbled by it," Dr. Chi said. "I'm speechless about how well she's done, and we're all so proud that she is giving back to the field with the personnel element she'll provide in the future for people with similar issues."

Ms. Fustos has shadowed Ms. Adams on her rounds to help children with hearing disorders. She has won multiple awards. Over the years, she has readily stepped forward to discuss her condition and help others who face similar challenges.

"The theme running through my speech is that all the things I've been able to achieve weren't because of me," Ms. Fustos said. "It was a team effort of doctors, surgeons, my parents and family, audiologists, therapists and teachers involved in my journey. I'm really speaking to honor them."


David Templeton: dtempleton@post-gazette.com or 412-263-1578.

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