It was about a month and a half since Ike failed his newborn hearing screening in the hospital. During that time, we went on like most families with a newborn. Busy with feedings, naps, and diaper changes. Occasionally we would question Ike’s hearing and wonder if any little movement or cry was in response to a sound. Honestly, it was too hard to tell. Most of the time he wouldn’t, but some of the time he would. The feedback we were getting was that it was likely fluid in the ear that would probably clear up by our next appointment.
We had our appointment scheduled for a test called an ABR (Auditory Brainstem Response). This is like a high-tech and more specific version of the newborn hearing screening we had in the hospital. It tests to see how well the inner ear (cochlea) and the auditory nerve to the brain are working.
The ABR works by putting electrodes (little stickers) onto the forehead and behind the ear, along with a little earphone in the ear. They play clicking or beeping noises at various loudness and frequencies through the earphone, and the electrodes measure the brain’s response. Don’t worry, the test is completely painless … unless you count the hours of prep work leading up to the test (you can read about this experience HERE)!
Before they start the ABR, the audiologist did a quick test to check for fluid in the ear, called tympanometry. It only took a couple minutes to show there was no fluid in the ear. I froze for a second because, in my heart, I knew what this meant. If it wasn’t fluid in the ear, did this mean he did have hearing loss?
Before the audiologist could start the ABR, Ike had to be asleep so any brain response detected would be due to the clicking sounds and not from any other source. I held him in my arms in an uncomfortable waiting room style chair, with wires coming from every angle off his head, and fed him his bottle. (PRO Tip: Parents, bring your Boppy pillow!) Eventually he fell asleep and the test started. This test takes about 2 hours y’all. This was a LONG 2 hours!
At the end of the test, the audiologist diagnosed Ike with moderate-severe hearing loss in his right ear and severe-profound loss in his left. I have to admit, at this point I knew I would be told he had some sort of hearing loss. I was not expecting her to tell me my son was deaf.
I cried. I didn’t want to, but I did.
I was in shock. I’m not sure I knew how to respond. All I knew was our lives were moving into uncharted territory. And that is scary no matter what the reason.
The audiologist proceeded to explain the test results and comforted us with stories of similar families.
Did you know, according to the NIH, 2 to 3 out of every 1000 babies are born with detectable hearing loss in the US? And more than 90% of deaf children are born to hearing parents?]
The ONE question to ask when starting a journey into the unknown:
“What’s next?”
In this moment, you are not the expert. You need to ask for help. Let the professionals teach you and guide you. Ask questions. LOTS of them! But the most important question (in my opinion) is “What’s next?”. It’s crucial to keep the process moving forward. If you don’t know what the next step is, ASK! You need to know what to expect and when to expect it. And when that comes and goes, ask again!
In our case, the next step was choosing hearing aids and transferring services to a place that offered assistance to any baby born with hearing loss in Oklahoma, called Hearts for Hearing.
**Final Note: Be prepared to do more than one ABR. (Just when you thought the ABR experience was over!) Once we got transferred to Hearts for Hearing, we had to do another ABR (had to be done in their facility) and then we had to do a THIRD to confirm the results. Each test came up with the same results, giving us confidence they were at least accurate.
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