Nov 2019  Healthy Balance - UVA Health

Blaze

“You don’t know how strong you are until you have to be,” reflects Stephanie Nuckols on her baby Blaze’s hearing loss and cochlear implants. “You don’t know how strong your tiny babies are until they fight for their lives and, despite everything, make it through.”

Blaze Ross was born with a twin. He and Gunner were both premature, 25 weeks early, with a host of complications. Both had brain bleeding that resulted in hydrocephalus, a build-up of fluid in the brain. But unlike Gunner, Blaze presented some additional complications. Blaze had an opening between the heart vessels known as patent ductus arteriosus (PDA). And another complication would arise in the upcoming weeks: Blaze was failing his hearing tests.

It was a day Stephanie remembers as not only unexpected, but traumatic. The twins would need to be transferred to another hospital for surgery. The one place that had the technology to receive them was UVA. When Stephanie and the twins arrived at UVA, she didn’t know what to expect. The NICU team at UVA provided the wide array of immediate, specialty care needed for Blaze and Gunner. “They were so amazing,” remembers Stephanie. “Although the experience was traumatic, the nurse, doctors and staff … I couldn’t have done it without them.”

For Stephanie, learning that Blaze was born with without the ability to hear meant she had to make some difficult decisions about his life. She could either learn and teach Blaze and Gunner American sign language (ASL) or choose a cochlear implant procedure. Stephanie was concerned about adding the challenge of learning ASL to the many trials Blaze was facing from a premature birth. Given everything, the choice of cochlear implants was a “no-brainer.” “Blaze’s hearing loss was severe enough to deem him a cochlear implant candidate,” explains speech pathologist Lori Bobsin, PhD, CCC-SLP, LSLS Cert. AVT. “We knew hearing aids probably would not work.”

“Cochlear implant surgery takes about two hours,” explains otologist Bradley Kesser, MD. “It’s an outpatient procedure, so the child comes to the hospital, has the surgery, and can go home the same day.”

“Blaze and Gunner are night and day,” says Stephanie. “Both are sweet, loving and caring, but Blaze is my momma’s boy, glued to my hip.” She continues, “Gunner is up in your face, ‘Give me your attention.’ Blaze is more of a ‘I like to play by myself’ kind of baby, until he wants some love.”

Having Gunner as a twin serves as a useful benchmark for Blaze’s development in speech therapy.

“Our goal with his cochlear implants and with speech therapy is to have him catch up to his brother. Pretty much as soon as possible,” says audiologist Cynthia Clark, AuD, CCC-A. Bobsin adds, “If we get early intervention, if we have appropriate technology and qualified professionals and a parent who’s motivated and dedicated, that child will develop to whatever level he would or she would have developed if she had not had a hearing loss.” Stephanie admits that therapy has not always been easy. “Therapy has been hard, to see some weeks with no progression.” “But he has come so far.”

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Deafblindness

Here is a link to Deafblindness support and information.
They are based in Western Australia and supported by Senses Australia.

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Hear For You web site

Vision Statement: “For all young people who
are deaf to reach their potential in life.”

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