She looked at us and said, "Your son has profound, sensorineural hearing loss."
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A few hours after my son was born, the nurses took him to the nursery for a routine hearing test. When they brought him back, they gently told us he’d failed the test. "Don't worry," they assured us, "It’s common after a c-section—could just be fluid in his ears." So, I didn’t worry. Not yet.
The next day, he was tested again. Another fail, but still no need to worry, they said. They’d try once more before we left the hospital. On the day we were discharged, he was tested a third time—and again he failed. They recommended coming back in a week for a final follow-up. “Most babies pass when they come back,” they reassured us.
The wait was difficult. I was a first-time mom, flooded with emotions, and while I tried to stay calm, the fear of all the "what ifs" started to creep in. I imagined what life might be like if my son couldn’t hear me—and at that moment, it felt like the hardest thing to accept.
A week later, I returned to the hospital with my mom by my side. Another test—he failed again. This time, they connected us with Wyoming Early Detection and Hearing Intervention. Suddenly, our future felt like a mystery. They referred us to the nearest specialist, four hours away in Salt Lake City, but they were booked out for months. Thankfully, we found a pediatric audiologist about 5.5 hours away in Casper, Wyoming, and within a week, we were making the winter drive, hoping for answers.
Arriving in Casper after a long day of travel, we met a kind and compassionate audiology team. The audiologist explained she would perform an ABR (Auditory Brainstem Response) test, which required Bode to be sound asleep. So, in a tiny, hot, quiet room, I nursed him to sleep--and we waited as she placed small electrodes on his head. For two hours, we listened to beeps and tones, watching her focused expression. Finally, she turned to us and said, “Your son has profound sensorineural hearing loss.” I asked, “So, he’s deaf?” She nodded, giving us a soft yes.
In that moment, I was devastated. I thought about how he would never hear me say, “I love you.” I was overwhelmed, even as she reassured us that there were options: cochlear implants or learning American Sign Language. That night in our hotel room, I called my mom to tell her the news. It felt like our world had shifted on its axis. I didn’t have words to explain it to friends who texted, checking in. We were in mourning—not for our son, who was perfect, but for the future we had imagined.
The next day, we did another round of testing, which confirmed the results. The audiologist gently asked if we’d thought about pursuing ASL or cochlear implants. Without fully understanding, we leaned toward implants, hoping for a chance that he could hear our voices. I had never heard of cochlear implants before, and my initial thought was, “Oh, a surgery can fix this.” I didn’t yet realize that even with implants, there would still be a lot of technology and adaptations involved.
As we left, she fitted him for hearing aids, which would be our next step. These devices were challenging with a wiggly three-month-old, but we persisted. The hearing aids didn’t change his ability to hear, but they prepared him for wearing cochlear implants. Months later, his audiologist praised him for adapting so well, even joking that I should coach other parents--Bode never ripped his cochlear processors off and I think it is because he was so accustomed to wearing his hearing aids. (My secret was using toupee tape to hold them in place!)
Those early days were filled with appointments: audiology, otolaryngology, genetics, early intervention, postpartum therapy.. It was hard to keep track of who these people were. We had a whole team of hearing specialist we had to meet with and we were making life changing decisions for our infant. We made one decision at a time. From 2 months old to 6 months old, we drove to Salt Lake City every two weeks for appointments and when we weren't driving there we were scheduling zoom appointments. We had a major milestone appointment at 6 months old, he was scheduled for an MRI and would have to be sedated. This MRI would determine whether or not he was a cochlear implant candidate. Sitting in the waiting room while he was under anesthesia, I felt the weight of the unknown. There are many factors that can cause hearing loss, but in order to be a cochlear implant candidate your inner ear has to have developed and not have abnormalities. The MRI would tell us if his cochlea was viable. When I look back at the pictures I took of him while I was waiting for him to wakeup from anesthesia, I get emotional remembering how scared I felt. It's amazing how much has changed in the year and half since then. But at the time, a future of raising a deaf child, as hearing parents, was so far from anything we knew or imagined.
Fortunately, the MRI confirmed his cochlea was viable, meaning he could proceed with the surgery. The issue with Bode's inner ear is that the hairs within his cochlea do not move. Our ears are made up of three parts: the outer ear, the middle ear, and the inner ear. Within the inner ear you have the cochlea and the vestibular system. The cochlea is the snail-shaped organ responsible for hearing (pictured above). The cochlea contains fluid-filled chambers lined with tiny hairs that vibrate when sound enters. This vibration sends electrical impulses to the brain---his hairs do not vibrate, therefore his brain never receives a signal that there is sound. A cochlear implant would bypass all those little hairs and send a signal to his brain via the electrodes on the implant (pictured above). It is wild to think about.
The next step was a CT scan, which would map out the best placement for the implants. With a bit of creativity and a well-timed nap, we were able to have a natural sleep scan locally, eliminating another sedation and long drive.
The CT Scan was our last major appointment prior to Bode's surgery. We did have some genetic testing done through the hospital, we found out we are carriers of the MYO15A gene, which is the third most common gene mutation to cause hearing loss. That added context, but by then, we were simply focused on giving him the best support we could. Bode was set to have surgery a week before Christmas and then we would come back after the New Year for activation day.
If you’re reading this, you might be at the beginning of a similar journey, looking for hope. Now, two years removed, our lives are richer and more vibrant than I could have imagined. My son may not have experienced sound in the way I first expected, but every day, he surprises me with his resilience and joy. I get to tell him "I love you" in ways beyond words. And the love he reflects back—whether signed or spoken—fills my heart in ways I never could've imagined.
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