Stories about: Deaf and Hard of Hearing Program

Learning to listen: A journey with deafness

After months of doctors appointments, Bosyn is diagnosed with progressive deafness and must learn ASL to communicate.

Before her son’s first birthday, Xi began to worry that something was wrong. “Bosyn was only around a year old, but I could tell he was very distracted — he wouldn’t look up when a phone rang or when a character in a movie yelled,” recalls Xi. “He would respond more to bright lights or colors than to sounds.”

The nine months following his second birthday were filled with appointments, inconclusive hearing tests and pediatricians dismissing Xi’s worries because she was a first-time parent.

But Xi couldn’t shake the feeling that something was wrong.

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Experience Journal: Growing up with hearing loss

baseball_shutterstock v2__109556990In the U.S., roughly two to three out of every 1,000 children are born deaf or hard of hearing. This may launch families into unfamiliar territory as more than 90 percent of parents of deaf and hard of hearing children are not deaf or hard of hearing.

Some parents may have never met a deaf or hard of hearing person. As they begin the journey of raising their child, they may feel unfamiliar with the effects of hearing loss on acquiring language, communicating effectively with others, achieving academically and developing positive self images. There are a number of informed perspectives, resources, interventions, medical treatments and assistive technologies that can help children with hearing loss lead successful and fulfilling lives.

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The Hearing Loss Experience Journal, created by the Boston Children’s Hospital Deaf and Hard of Hearing Program and the Department of Psychiatry, includes stories and experiences from children, young adults and families and represents the collective wisdom of families living with pediatric hearing loss. Here are some of their stories about growing up with hearing loss, using hearing aids and cochlear implants and more, in their own words.

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Cochlear implants click for Isabelle

Isabella-IVFive-year-old Isabelle Labriola loves sound. She eagerly chats with her twin sister, loves to sing along to holiday songs and enjoys dancing to music. Sounds click with Isabelle, even though enlarged vestibular aqueducts (the tiny canals in the inner ear) resulted in moderate-to-severe hearing loss in her right ear and severe-to-profound hearing loss in her left ear.

Isabelle’s hearing loss was identified at birth, and she was fitted with hearing aids at 6 weeks of age. Cheryl Edwards, AuD, interim director of Diagnostic Audiology in the Department of Otolaryngology and Communication Enhancement at Boston Children’s Hospital, provided testing and hearing aid management every few months. Results of these periodic hearing tests showed the hearing loss was progressing.

By 2 years, Isabelle lost hearing in her left ear to the point where the left hearing aid no longer helped. She managed remarkably well and developed good speech skills with a single hearing aid in the right ear until 4 years of age, says her mother Vicki Labriola.

“We started to see progressive hearing loss in her right ear,” says Vicki. Isabelle’s otolaryngologist, Greg Licameli, MD, director of Boston Children’s Cochlear Implant Program, together with her care team suggested that Vicki and her husband, Jason, consider cochlear implants for Isabelle, because it was likely that she would lose all hearing in the right ear. She would then be deaf in both ears.

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