While I knew Sonya had hearing loss, I didn’t know how profound it was until she did an Auditory Brainstem Response (ABR) test. This test uses a special computer to measure the way Sonya’s hearing nerve responds to different sounds. A much more sophisticated tool than the initial hearing screen done at the hospital, the ABR test required a visit to NYU Audiology just 11 days after Sonya’s birth.
I held Sonya in my arms as a young audiologist attached electrodes to her forehead and above her ears. The audiologist performed a number of tests over the course of 90 minutes. Sonya slept (though she still managed to soil her diaper — which leaked onto me — ah the joys of motherhood…). I held her as still as I possibly could, and watched the computer screen. Waveforms – recording brain activity in response to sound – traveled across the screen. The audiologist remained silent.
When the test was over, the audiologist gently removed the electrodes from Sonya’s head with warm water. Sonya didn’t even flinch. The audiologist told us she needed to speak with her colleague and would be back momentarily. I prepared for the worst.
When she came back to the room, the audiologist informed us that Sonya had not responded to the test in her left ear and had only marginally responded in the right. She had failed the screening and the test indicates that she is profoundly deaf. Despite my preparation, tears welled up in my eyes. And then something happened that I will never forget. The audiologist’s eyes also welled up with tears. I realized that this was an extremely difficult conversation for her to have as well. “I am so very sorry,” she told me.
I am used to doctors with cold bedside manner. But the audiologist’s inability to hide her emotion – made me feel better. Her empathy was very comforting.
Her hand quickly wiped away a tear and she sniffed. Apologizing awkwardly and unnecessarily, she then explained our options. We could pursue sign language and be part of the deaf community, or we could opt to focus on oral/auditory language. If Sonya did indeed have GJB2 she would likely be an excellent candidate for cochlear implants. If we went that route, she said, we should have Sonya fitted for hearing aids as soon as possible.
The idea of my baby girl wearing hearing aids was too upsetting for words. I couldn’t fathom attaching such devices to her head. And at 11 days? Why? What was the point? But the audiologist held firm. “We have seen significant improvement when babies wear them early,” she said. “The sooner we can stimulate the auditory nerve, the better. It will help her transition to sound much easier when she is implanted with cochlear devices.”
She even offered to give us loaner hearing aids that day and to have hearing aid mold impressions done in the next 10 minutes. But I said I needed to think about it further, and we left. My head spinning as we got back in the UBER to travel uptown. The future seemed so uncertain for Sonya that day. “This is my deaf baby Sonya Rose.” I repeated to myself as I prepared to introduce her to strangers who would stare awkwardly at the huge hearing aids dangling on the sides of her head.
Hearing Sonya Rose 
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