How to Tell People Your Child Has Hearing Loss (And How to Respond)

We sat around a circle in a colorful nursery school classroom. Our babies in front of us, propped up on pillows. Sonya was only three months old at the time. My breasts throbbed in pain as I had plugged ducts once again – but this was not a breastfeeding support group — as desperately as I wished it were. I can’t help but find the humor in that I just wished I were with a group of strangers talking about my breasts!

No, this was “group therapy” for new parents of babies with various degrees of hearing loss.

“Hi, I’m Missy,” I said, louder than intended. “This is my daughter Sonya. She is three months old. She is profoundly deaf.”

Profoundly deaf. How silly I was. As if the term deaf didn’t already imply profound hearing loss, but I was new to this.

As a new mom to a child with hearing loss, I struggled to describe my child’s condition. While my immediate family knew, Yan and I had yet to tell any friends or distant relatives. My greatest anxiety at the time was how do I tell people Sonya is deaf when I had trouble saying the word “deaf” without falling to pieces?

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We decided to tell people one-by-one, or not at all. This was emotionally very taxing. I didn’t feel it was something I could say by phone, so we just waited until an in-person meeting naturally arose, and then tried to play it casual (which in retrospect, was very very awkward.)

“Yeah, so Sonya is actually deaf.” I told my good friend who had come over for brunch. 

“Oh,” she said. Her face expressionless. 

“Yeah, we were really shocked. But we are looking into her getting cochlear implants, which are really amazing.” My eyes filled with tears but I grinned through it. 

“Yeah – she won’t even be deaf then.” 

The conversation moved on. And I was devastated by how cavalier my friend’s response was to our situation. But the fact was, I had put her on the spot. She had no idea how to react (how could she?) In another instance, we had the opposite reaction.

“Sonya can’t hear.” Yan told his friend. “She has a genetic mutation. It’s pretty interesting actually, she will probably get cochlear implants.”

“I’m so sorry. I just can’t get over the irony,” his friend replied. “Two people who love music so much….”

It was kinda like he had twisted the knife. But we just smiled politely and moved on.

Now, these were just a couple terrible responses. We also received many very kind and warm and empathetic words of support, which I hold dear to this day. I wanted to relay the above experiences because a friend of mine took the opposite approach when informing friends of her child’s hearing loss.

She simply sent a mass email.

Her email was short, optimistic, honest and explicit. She didn’t delve into her heartache or fear, but she she also didn’t pretend all was hunky dory. Rather, she let her friends and family know that while her child is doing very well and is a great joy to their lives, they were born with profound hearing loss.

I think sending an email is wonderful solution. I came up with the below template in case it is helpful for parents out there.

Dear family and friends. 

Sonya is a very special baby, and the birth announcement can’t possibly say it all. We feel so lucky and blessed to be her parents. Sonya was born with profound hearing loss. We want to give you time to adjust to the news so you won’t feel the need to have an immediate response. We would love for you to meet her. She is intelligent, beautiful, bubbly and full of curiosity. We are very optimistic for her future as she is a likely recipient for cochlear implants, which will afford her the ability to hear most everything. We are still gathering information, but will keep you apprised. Please don’t hesitate to reach out.

Love, Missy and Yan

And for those out there receiving the news that your friend’s child has hearing loss, here are some tips on what to say and what not to say:

What Not to Say 

“I’m sorry” Any statement that contains pity was not pleasant to receive and didn’t convey the feelings I had about my child at all. I felt blessed from the moment Sonya was born.

“It could be worse” statements felt like the challenges we were only starting to understand were being minimized.

“I think this happened to you because you can handle it.” or “God gives special children special parents.” Implies that my child’s situation is so awful only I would love and care for her. Also, trying to explain to a parent why God did something is rarely helpful.

What to Say

I think congratulating the new parents is the most important thing you can say – because they deserve to be congratulated.

Offer to help. If you know of someone who has cochlear implants already, offer to connect them. We were taking Sonya to multiple appointments a day for months after her birth – so meals, offering to babysit, etc. are great ways to respond.

“She looks just like you.” I loved it when people complimented Sonya’s looks or behavior. Still do 🙂

Acknowledge the grief the parents are feeling. “I know I can’t take the pain away, but I wish I could.” Or, “There will be challenges but the love and joy will be so intense you will not be able to imagine your life without this little girl!”

 

 

Do you have other ideas on how to discuss hearing loss that worked for you? I would love to hear about them!

 

 

Speech Therapy – Then and Now

In my latest post I discuss the importance of speech therapy BEFORE Sonya could hear with CIs

When Sonya was just four months old, she began speech therapy at the Center for Hearing and Communication in New York City. At that time, Sonya was wearing hearing aids, but did not yet have cochlear implants (she wasn’t implanted until she was seven months old). While the hearing aids certainly stimulated Sonya’s auditory nerves, her hearing loss was so profound that they didn’t do much for her. Regardless, we continued to make that hour long schlep each way downtown so that she could receive speech therapy.

You might ask – what’s the point of speech therapy before a child can actually hear? Believe me, I asked myself (and our therapists) this same question. While the idea of a speech therapy session might seem ridiculous at such a young age, I learned and now can attest to the fact that the time spent at the CHC before Sonya could hear was critical. It accomplished the following (and I am sure more):

  • Helped lessen the trauma of the upcoming transition to sound. It acquainted Sonya to the therapists, toys and games that she would one day hear – thus easing a transition that otherwise could be quite traumatic. Sonya bonded with her therapists at an early age. We played with balls that chimed, airplanes that would one day be associated with the “ling” sound “aahh,” and toys that moved and played music. These were toys that were visually stimulating, and would interest her even further (without scaring her) the day her cochlear implants were activated.
  • Helped to increase Sonya’s attention span. Early speech therapy sessions also helped to prepare Sonya for the future “work” she would have to do. Focusing on a single activity for an extended period of time helped her increase her attention span, which would be critical for future speech therapy lessons.
  • Served as therapy for me too. At times, Sonya’s speech therapy sessions were really my therapy sessions. An opportunity to discuss my own fears and concerns as I processed Sonya’s hearing loss. Confiding to Sonya’s therapists, I sought advice from sleep training a child with hearing loss to how to inform relatives and friends that Sonya was born deaf.

It wasn’t an easy time to say the least. I talk a bit about what it was like to travel six hours a week with an infant in Manhattan here. It was taxing on Sonya too. She didn’t get on schedule as easily as other babies. We didn’t have as many playdates (if any those early months), which was hard on me as a new mom. But I am so grateful we did it.

Today, at two and five months, Sonya is thriving in speech and school. The below video was taken a month ago. Sonya will continue to do speech therapy throughout her school years. It’s still not easy, but seeing our efforts pay off is a huge motivation to keep it up.

Three Weeks In and Five Observations

Five observations three weeks after Sonya’s cochlear implant activation.

Several weeks following Sonya’s initial activation and here are my thoughts:

1. Our experience has been very different from the many YouTube videos which portray the activation of a cochlear implant as some kind of miraculous event – in which one’s ability to hear can be turned on like a light switch. I have watched these videos over and over. They are so moving. I am not saying such videos are not authentic. But I do sometimes question the context. Was this truly the “first time” the person could hear? Or, was this the third or fourth mapping? In any case, our experience with Sonya was much less dramatic.

2. The real work is now. While Sonya may be hearing sounds, she doesn’t yet recognize them and is having trouble processing them. She must learn to listen for and identify every new sound – which requires intense therapy and practice at home. Interestingly, while Sonya used to be able to hear low register sounds with her powerful hearing aids, she now is reacting only to high register sounds (such as bells ringing or, the “sh” and “s” sounds). She will need to re-learn how to interpret and process low register sounds.

3. Sonya’s sleep schedule has changed. She is exhausted after her intense therapy sessions in the morning, and will often sleep 2-3 hours following. At night, however, after a day of stimulation, her brain may be having trouble shutting off – and she tosses and turns, unable to fall asleep. Apparently, this is very common for babies post-implantation. From what I understand, it typically takes about a month for babies to adjust to being able to hear.

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Sonya is exhausted after her daily speech therapy sessions.

4. I find myself questioning every movement she makes. Was it a normal developmental milestone or an issue that is developing post-surgery? For example, Sonya loves to sway her body back and forth. For several days we worried whether this adorable swaying might actually be a vestibular issue resulting from the surgery. Thankfully, we no longer believe it is the case – as it is clear that it is voluntary (she just loves to dance!)

5. Further to the above, there is a constant anxiety that I am not doing enough during the day to stimulate Sonya’s hearing. I try to emulate the games we play during therapy, but often Sonya’s responses are less noticeable. Am I speaking loudly enough? Am I using the right sounds? Am I doing this right?

Ending on a positive note – A recent coup was that we were able to adjust the size of the processors Sonya wears behind her ears. We attached the compact rechargeable battery rather than the full size battery. This allows Sonya to wear her implants without additional wires clipped to her shirt. Not only challenging for us to constantly adjust where the clips were placed, depending on whether she was sitting or lying down, Sonya can now move around much easier. Special thanks to my husband Yan and mother-in-law Lillian for pushing me to make that change!

Not an Easy Week

It has been nearly a week since Sonya’s activation. I want to be positive here, but the truth is that this has been a very difficult week.

While Sonya has done amazing in terms of getting used to hearing much more sound than she was ever used to, she is also a baby. She loses patience quickly and doesn’t love having large devices hanging behind her ears and attached to her clothing. I am grateful that we were instructed to have Sonya wear hearing aids before her surgery – as she has grown somewhat accustomed to hearing devices. However, since her surgery a month ago, she has tasted the freedom of not wearing anything on her head. The cochlear implants are also much larger than her hearing aids and involve much more equipment. I feel like suddenly, what seemed to be manageable has become much more complicated…

Our speech therapists and audiologists have advised us to have Sonya to wear the implants as much as possible. But this has proven to be quite challenging. Particularly, in her car seat (where she spends about 5-6 hours per week on our way to and from speech therapy) and in her stroller.

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The issue is that the two coils, which connect/deliver information to the internal device, are placed on the back of her head. As soon as Sonya moves her head they fall off. Her implants came with a remote which beeps to alert us when the coil is off the implant. This weekend, I think the remote beeped about 40 times…

I could simply turn off the remote – but I want to do everything in my power to ensure that Sonya can hear. I kick myself anytime I notice that it has fallen off.

The good news is that the pilot caps and headbands have worked quite well to keep the processors in place behind Sonya’s ears. As long as she is upright – the processors and coils tend to stay on.

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Aside from the physical adjustment of learning how to effectively use and keep on the new equipment, it has also been an emotional adjustment. Whenever I take Sonya out in her stroller, her beautiful smile never ceases to attract strangers, who often approach us and comment on how adorable she is. I normally welcome such interactions, but these days, I feel nervous whenever it happens. Should I mention why she has wires hanging down from her head? Is it more awkward to bring it up? So far, I say nothing – and just accept the compliment and walk on.

From talking to other parents, I hear that the current adjustment period is temporary – and every baby who gets implants has the same problem – so they are on an even playing field. In time, Sonya will develop the ability to put her implants back on her head as soon as they fall off. In the meantime, would love to hear from other parents any suggestions to keeping them on her head. Thank you!

Sonya’s Cochlear Implant Activation

This week, Sonya became the proud owner of two Cochlear Nucleus devices. We turned on the devices over the course of two days — one day per ear.

At first, the audiologists tested the devices internally – so that Sonya could hear the sound, but we couldn’t. When the sound played, a box with a monkey in it lit up. Meanwhile, another therapist distracted her. So the audiologists could see if Sonya heard the sound by whether she would turn to the monkey in the box.

Once we knew Sonya was reacting to the sounds internally, the audiologists tested her reaction to sounds in her environment.

Here is Yan with Sonya on day 2 – testing her hearing in her left ear:

Unlike hearing aids, which came with a small pack of supplies, cochlear implants came with literally two small suitcases full of additional products to help you take care of the devices. It is a bit overwhelming to be honest – but I also feel extremely grateful that we have everything we need.

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Sonya even received a Cochlear Koala – with implants of its own, which she already adores and sleeps with in her crib.

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While I know this is a wonderful development, these past couple of days have been pretty tough on all of us. For one, it is an adjustment to see Sonya with the devices on. They are larger and more cumbersome than her hearing aids. Over the past few weeks, Sonya has grown accustomed to not wearing anything on her head, so she protests each time we put the CIs on by crying and wriggling. Sonya is also getting used to hearing much more sound than she was previously used to – which is tiring for her.

So I cling to small moments that tell me we are on the right path. Yesterday, while nursing – I started to sing and Sonya turned her head toward me and smiled so sweetly. She heard my voice. I’ll never forget that moment.

Preoccupations and Coincidences

Hours after our OB informed me that our unborn child had a 25 percent chance of deafness, Yan and I attended a piano concert at the Armory. The pianist, in a brief introduction before playing, explained why he had chosen to focus his concert exclusively on Beethoven’s works. Maybe it is the musician in me, but I knew this was a sign. Surely – the fact that we were listening to a concert of Beethoven’s works just hours after our genetic results had been communicated indicated that our child would be deaf.

Thinking back on it – I realize it was a preoccupation – but the coincidences didn’t seem to stop there. When I was 20 weeks pregnant, Yan and I decided to take a baby moon. I didn’t want to travel far, so we decided to take a road trip to the Berkshires. Knowing nothing but its Trip Advisor reviews, I made a reservation at the Birchwood Inn in Lenox, Massachusetts.

When we arrived, we were greeted by the inn keeper, a petite woman with short grey hair and glasses named Ellen Chenaux. Ellen helped with our luggage and gave us a tour of our room. She had gone all out for our baby moon, and provided us with a small basket of cookies, certificates for free ice cream at the town ice cream parlor, a stuffed dog (which Sonya now loves) and even a jar of pickles. It was too adorable. As she turned toward the door, I noticed she was wearing a cochlear implant.

The next morning as we entered the dining room, a white faced golden retriever brushed against the side of my leg, asking for a pet. The sweet animal sat at my feet near the fireplace as we enjoyed our breakfast, and I discreetly threw her a few scraps. Ellen must have noticed that we had connected with her dog, as she approached our table and explained that Quinn – like her – was also going deaf in her late age. Apparently, Quinn came to Ellen years earlier through a program called NEADS — Dogs for Deaf and Disabled Americans — after Ellen had developed late-onset-adult deafness. According to the Birchwood Inn’s website:

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Quinn — aka Molly Quinn McMuffin — is Ellen’s 14-year-old Golden Retriever and former Hearing Ear Dog…Quinn and Ellen — a late-deafened adult with miraculous cochlear implants — were a team for 12 years thanks to NEADS, the Princeton, MA-based association. Quinn, who is now retired, went from being an inmate, and alerted Ellen to sounds Ellen cannot hear by tapping Ellen’s leg with her paw.

Yan laughed as soon as Ellen returned to the kitchen. “Um…looks like all signs are pointing to deafness,” he joked. I tried to laugh it off – but couldn’t help but feel disturbed by the fact that out of every B&B, we chose the only one who had a deaf inn-keeper and dog.

Accepting a New Normal

While I realize it is petty, one of the most upsetting aspects of Sonya’s hearing loss was the fact that she would need to wear hearing aids, and eventually cochlear implants.

I love the way Sonya looks and couldn’t process the fact that she would need external devices in order to hear. Above all, I feared how she would be perceived by others. The implants and hearing aids are visible and will cause people to question whether she is “a normal child.” I am ashamed to admit that it took several audiological visits to convince me that her ability to hear far outweighed such aesthetic differences.

When Sonya was one month old, she received a pair of loaner hearing aids from NYU. Aside from the fact that they blinked red lights to indicate they were on, they were actually very cute. IMG_2387IMG_2384

I realized then that my underlying fear – that these aids would somehow define my daughter – was unrealized. Sonya’s personality continued to shine, and the hearing aids did not take away from that. In fact, people didn’t even notice them – or if they did – they were drawn to her inner and outer beauty and the aids were only a side fact.

 

The Surgery

At 1:50 a.m., this morning I woke Sonya up to feed. I know you are never supposed to wake a sleeping baby, but today was an exception. Today was Sonya’s surgery to receive bilateral cochlear implants at NYU, and she was not allowed to consume anything after 2 a.m. As I held her in my arms, I sang to her and promised her that everything would be okay. The calmer I was the calmer she would be. “Put your oxygen mask on first, before assisting others,” I repeated this mantra to myself.

We arrived at the hospital at 5:45 a.m. Sonya was to check in by 6 a.m. to ensure that she would go first (barring any unexpected surgeries). The entire process was seamless. We only had to wait 10 minutes before we were brought into triage. There we dressed Sonya in her hospital gown (the CUTEST thing ever!) and were greeted by a number of nurses as well as our anesthesiologist.

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Our anesthesiologist in particular made me feel at ease. She had been working with our surgeon, Dr. Roland, for more than 15 years. She reviewed Sonya’s file. Asked some questions and then walked us through the process of putting Sonya under. Her tone was direct but also caring. She kept stopping to gush at how cute Sonya looked.

Before we knew it, it was time to go. I sat in a wheel chair with Sonya in my arms as they wheeled us up to the surgical floor. Yan walked beside us. A nurse parked us behind a traffic jam of five other patients also waiting for surgery. Holding Sonya close I repeated my mantra while caressing her hand. I did everything in my power to remain calm. She looked at me and then at the lights above us. Way too soon a nurse asked me for Sonya. I stood up from the wheelchair and gave Sonya a quick kiss on the nose before turning away. I figured lingering would only make things worse. I heard no cry from her. It is possible she cried later, but I believe she remained calm as the nurse carried her into the operating room. A knot of anxiety tightened in my chest.

I suddenly felt light-headed so Yan and I went down to the cafe to have breakfast. I ordered a blueberry muffin and a coffee. We sat in the lounge area and talked about how well Sonya behaved so far. How proud we were. How adorable her hospital gown was…I wondered if we could we buy it after the fact? When we finally went back upstairs a nurse approached us.

Sonya is doing fine, she told us. The doctor did have issues with her IV. She is a chubby little thing – but the IV is in after about 30 minutes of trying. The surgery just started.

Yan squeezed my hand and looked at me with a grimace on his face. I knew what he was thinking. Our poor baby being had surely been poked numerous times by a needle. But I decided to keep things positive. “If that is her only complication – I’ll take it!”

Just an hour later and Dr. Roland himself came into the waiting room. I stood up and he gave us a two thumbs up sign of relief and signaled us to follow him back into a private room. Sonya was indeed fine. Everything went very well. We would see her very soon. I felt as if a huge weight had been lifted off my chest. I felt light and so very thankful.

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About 30 minutes later, we were told we could go see Sonya. We followed a nurse into a tiny curtained-off room. Sonya’s ears were covered in an ear-muff-like bandage. Yan said she looked like a Cheburashka – a Russian cartoon character. Sonya had awoken, but had fallen back to sleep by the time we arrived. oxygen was being blown into her face. She looked like she was having a good dream.

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When she woke up an hour later, the reality of the procedure set in. Sonya was frightened and in pain. She screamed while she nursed. It was upsetting. The doctor told the nurse to give her morphine. I hesitated before allowing it, but seeing the level of pain she was obviously in, I conceded. Within a few minutes, Sonya was fast asleep. She slept a good long while before waking in a much better mood. A wonderful nurse stayed with us the entire time. She checked Sonya’s vitals consistently and answered any questions that arose. When Yan left to grab us dinner, she sat with me and we talked about the amazing things that were to come when Sonya would be able to hear.

By 8 p.m., Sonya was doing great. She was eating every couple of hours and was pooping and peeing. All good signs. Her pain was now being managed by infant Tylenol. Her vitals were good as well. We decided she was ready to come home.

Asleep in her bed, I alter between states of relief and fear that she will develop an infection. But above all, I feel grateful. We had the most phenomenal medical care. I emailed our surgeon several times over the weekend with questions and he responded each time in under 10 minutes. Amazing. With the surgery behind us, we have so much to look forward to.

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Testing 1 2 3 – CT Scan FAIL

For the past two days, Sonya and I have been at NYU Langone Hospital in Murray Hill, attempting to get her a CT Scan. Her initial appointment was scheduled for Monday, but it turned out that our ENT had authorized the wrong type of exam – and thankfully, a radiologist noticed and canceled it. Had he not done so, Sonya would have been exposed to radiation for no reason…

We were able to secure an appointment for Thursday at 2:30 p.m. instead. Sonya slept in the UBER on the way over, but when we arrived, she was groggy and still waking up. Her sleep disrupted by the fact that it was 20 degree

One of many UBER rides with Sonya
One of many UBER rides with Sonya

s outside. We waited an hour for the appointment and finally made our way into the room.

The test – a temporal bone scan – would only work if Sonya was perfectly still – a feat that she would only accomplish if in deep sleep.

Of course, as soon as we entered the room, Sonya woke up immediately. Her big grey eyes mesmerized by the lights on the machines and the computers. The room had a glass wall through which you could see another room of technicians and computer screens.

The CT Scanner is about the size of a small car. It consists of a surface to lay upon beneath a circular structure that produced a light breeze. A screen on the scanner displayed Sonya’s name and birthday. Sonya looked so small lying on the base of the machine. I held her hand and stroked her eyebrows and cheeks, hoping to get her to sleep.

Sonya stared at the technicians and when she caught their eye, she smiled. There is just something about this child – she is always working to connect with people. It’s amazing. While Sonya was in a great mood, the technicians had looks of concern on their faces.

As a new mom, I am only getting to know my daughter. While I have cared for her for three and a half months, as she develops, her tastes and moods change. Typically, nursing will accomplish the goal of getting her to sleep, however, so I offered to try that. The technicians put me in a small room and turned the lights down. Sonya immediately took to the breast, sucking voraciously. She takes about 10-15 minutes per side, and every five minutes a technician would peak his or her head through the door – to see how I was doing.

When she had finally finished, Sonya looked up at me with tired red eyes, and milk dribbling down her chin. Were we at home, she would have gone to sleep immediately had I swaddled her and rocked her to sleep – singing Norwegian Wood (she is a Beatles fan!). But here, her eyes darted around the room. She yawned and then stretched – bending backward – her cue to me that she no longer wished to be held. As I continued to hold her in my arms, she kicked and struggled. Then, she pooped. A loud gas and then warmth! It had exploded up her back and onto my pants and sweater.

A technician poked her head back in, “everything okay in here?”

“Yep yep. We are fine. Just going to change the baby and then hopefully she will sleep,” I said. Although I knew that a diaper change was never followed by sleep. The cold baby wipes only disturbed her.

With Sonya changed and dressed (and with poop soaked through my own clothes hastily wiped off with a baby wipe) I held Sonya and walked toward the door as a technician simultaneously opened the door to check back in. She looked at Sonya and frowned.

“Still not sleeping, eh?”

Her disappointment was frustrating. I mean, here I was, covered in baby poop – doing my darndest.

“Nope…we might have to reschedule this test.” And at that minute, Sonya’s head dropped, she produced an enormous belch and a fountain of white curdled milk poured out of her mouth and on to her clothes and my arm.

The technician made a “yikes” face, and then offered us a bit more privacy again.

I sighed and looked at Sonya. She smiled.

Despite my grievances against the U.S. healthcare industry at large – and our ENT who made the earlier mistake, of course – the technicians at NYU were wonderful. They told me that I could come back tomorrow and as soon as Sonya is asleep – they would push other patients aside and attempt to scan her.

On Friday I rushed over to NYU as soon as possible – around noon. Sonya again fell asleep in the car ride, despite my efforts to avoid it. When I wheeled her in, the staff immediately made way for us. Yet, as soon as I put her on the table, her eyes popped back open.

Three hours later I was still struggling to get her to sleep. We returned home in defeat – as Sonya slept happily in the car.

The ABR Test

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.

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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.

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