I never would have thought a plain hospital parking garage could elicit such powerful memories.
But as I unbuckled my 3-year-old son from his car seat and urged him to walk quickly so we would make it to our appointment on time today, memories from the last time I visited Elkhart General Hospital flooded back.
I was cutting the timing close for that appointment, too, and I recall another woman rushing past me in the stairwell as she pulled a white lab coat over her shoulders.
“I’m glad I’m not the only one,” I said. She laughed and told me that at least I got a free pass because I was carrying an infant in a car seat.
The woman in the stairwell was actually the audiologist we were scheduled to see for Max’s auditory brainstem response test that morning.
After Max failed his newborn hearing screening, we were referred to a local hearing center with an appointment a few months out. On the day of the follow-up tests, some of the equipment was broken and our referral was passed to another audiologist in the area.
The next day, I answered an urgent call asking if we could schedule the tests for the following week. The audiologist wanted to see Max as soon as possible, as infants older than 3 months are more likely to need sedation for the test as the results are only accurate if there is no movement or external noise. Natural sleep is much safer than sedated sleep for an infant, and we were about to miss that window.
The test was scheduled for Max's 3-month birthday and we were given instructions to wake him early and wait to feed him until we were in the testing booth. If we timed it right, he would be hungry and tired enough that a bottle would put him in a deep sleep to allow for accurate results.
When we got settled into the noise-proof testing booth, the audiologist described the test and told me that she would be sending signals of various frequencies and volumes and measuring the response through electrical sensors on his forehead.
She asked me if I wanted to know the results as she was conducting the test or if I would rather wait until my husband could join when she was done.
“If you’re not sure how you would handle bad news, it's better to wait,” she said. An emotional outburst would put a quick end to the test.
My job was to remain still and calm, and I knew my nervous energy would be a disruption if I was wondering what the audiologist was recording the entire time.
“Tell me as you go,” I told her.
The machine started sending beeps through the baby-sized earbuds and the audiologist watched a chart on her computer. As the beeps went higher in frequency, she whispered that she was not registering a response.
The longer we could keep Max asleep, the more tones and frequencies the audiologist could test. Max stirred after about an hour, so we took a break while I nursed him back to sleep for another hour or so.
The audiologist flipped on the lights, invited my husband back into the booth and summarized the results: mild-to-moderate sensorineural hearing loss with a slope to the right, meaning higher frequencies are harder to hear. She sat with us for more than an hour and answered all the questions we didn't realize we had about hearing loss.
Will his hearing get worse over time? What caused his hearing loss? Will he need to learn sign language? Will he need hearing aids or a cochlear implant? Will he develop language at the same pace as his peers? How can we help him?
She didn't have all the answers, but she recommended a game plan: We would get Max fitted with hearing aids as soon as possible. Every day we waited, he was missing out on the sounds that would help him develop language.
Max's hearing aids were activated three years ago, and he is now filled with hundreds of words and questions to show for it (the early interventions through First Steps and the Elkhart County Special Education Cooperative helped, too).
We were back at the hospital today for an appointment with a genetics counselor. I'm certain we were offered a referral for genetics testing when Max was younger, but Travis and I both agreed: It won't change anything, so we don't need to know. But when Max was sick with a mysterious infection, I realized the importance of the test. Without knowing the cause of Max's hearing loss, every runny nose or stomachache would make me wonder if the symptoms were actually a rare genetic condition finally making itself known.
The results of a genetics test can't change Max's hearing loss, but they can help us prepare for future health complications in the case that his hearing loss is caused by a syndromic gene mutation. After a quick cheek swab, Max's saliva sample is on its way to the lab to screen for 200 of the most common gene mutations that cause hearing loss. In a few weeks, we'll know if Max's hearing loss is genetic (which is likely, given no other apparent cause), and whether it is associated with other symptoms (unlikely, but possible). There are a few genes that I am terrified of seeing on the positive list from the results, like one that can cause a disease called Usher syndrome which also causes progressive vision loss starting in late adolescence.
I remember leaving the hospital after Max's ABR. My husband and I sat in the car and let Max play with the steering wheel while we attempted to process the diagnosis. We weren't sure what his life would look like, but we knew he would be fine.
As Max and I left his appointment today, I know we were right: Thanks to early intervention, Max is a talkative toddler with Paw Patrol hearing aids. He will be just fine.
