"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.
New Hospital, New Discovery
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 nurses, doctors and staff … I couldn’t have done it without (them).”
Providers told Stephanie to wait until they were home in hopes that continued hearing tests would screen differently. But this wasn’t the case. More hearing tests only confirmed her fears: Blaze was born deaf.
Choosing Cochlear Implants
For Stephanie, learning that Blaze was born 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.”
A cochlear implant is an electronic device that helps those with severe hearing loss. A processor is placed behind the ear to transmit sound signals to a receiver under the skin behind the ear. The receiver sends the signals to electrodes in the inner ear, or cochlea. Surgery is necessary to implant these electrodes in the inner ear. From here, the hearing nerve is stimulated and the sound signals are sent to the brain.
“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.”
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"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.
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."