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Baby Raina’s hearing loss journey

hearing loss journey

When the nurse wheeled our daughter Raina’s bassinet away for her newborn hearing screening I said, “Go ace your first test baby girl!”

Forty-five minutes later, she came back with bad news: Raina didn’t pass.

“Nine times out of ten, it’s just fluid in the ears. We’ll repeat the test tomorrow,” she said.

Two repeat hearing screenings over the next two weeks revealed the same results. No one at the pediatrician’s office could give us definite answers. We were told to schedule an appointment with an audiologist for more information. 

Read more: What happened when I went to my first audiology appointment alone

At one-month-old, Raina received an Automated Brainwave Response (ABR) test from a pediatric audiologist. Throughout the assessment, the audiologist had a look of concerned concentration on her face. 

“This doesn’t bode well,” I thought.

Sure enough, the ABR results revealed Raina had moderate bilateral sensorineural hearing loss.

“What do we do now?” I asked.

“She’s going to need hearing aids,” the audiologist told me. “But first she needs to see an ENT.”

Finding the resources

Access to specialists is limited in our rural area. The nearest pediatric Ear Nose and Throat doctor (ENT) was a three-hour drive away. We made the appointment and drove the distance, fingers crossed in hopes of more concrete answers.

The ENT confirmed that Raina’s hearing loss was non-syndromic. He referred her for a hearing aid fitting, which we were fortunate to have taken place that same day. He also referred us to three more specialists: genetics, radiology, and ophthalmology.

During the appointment, I asked her ENT doctor many questions about her prognosis and her future. He soothed my fears and explained the “1-3-6 rule”: screening by one month, diagnosis by three months, intervention by six months.

“Children who receive hearing aids by six months old develop language at the same rate as their hearing peers,” our ENT said.

This was huge. It meant hearing loss wouldn’t interfere with her language development, as long as she received the technology in time. My goal became to exceed that standard and get her hearing aids as soon as possible.

Raina’s first pair of hearing aids

Calls to the insurance company, our pediatrician’s office, and the audiologist ensured all the proper referrals were in place. At exactly three months old, Raina received her first pair of hearing aids.

Read more: A lesson on baby’s first hearing aids

“What color do you want?” the audiologist asked.

She handed me an order sheet that offered all the colors of the rainbow.

For her ear molds, we chose pink, purple and blue swirl with iridescent glitter. For her hearing aids, we chose the Phonak Sky-VP model in silver. We decided on silver for the color because it would easily match any outfit or ear mold colors.

The first few days with hearing aids were an adjustment. Babies, in general, tend to draw attention in public places. Now that I had a baby with hearing aids, she drew even more attention. With acceptance as a kind of mantra, I tried to be as open and positive when well-meaning strangers asked questions like, “What’s on her ears?”

“With acceptance as a kind of mantra, I tried to be as open and positive when well-meaning strangers asked questions like, ‘What’s on her ears?'”

Raina is nine months old now and well-adjusted to wearing her hearing aids. She is especially alert and babbling with her hearing aids in. I’m also getting better-adjusted to answering questions about her ears. We are grateful for the improved access to language and sound that hearing technology enables for our hard-of-hearing daughter. Gratitude is what we like to focus on.

What was it like for your child to get their first pair of hearing aids? Let us know in the comments.

morgansnook
Morgan Snook is a writer from the Pennsylvania Wilds region. She enjoys being outdoors with her husband and two beautiful daughters.
Her youngest daughter has mild-to-moderate bilateral sensorineural hearing loss, probably genetic. She wears Phonak Sky hearing aids, which she got at three months old.

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