One Family’s Journey
Beyond the Diagnosis: Our Thriving Baby
By Stephanie Wittels Wachs, Texas H&V
My brain stopped working when the audiologist started her litany; my two-week old baby asleep in my arms, hooked up to a host of wires and electrodes. “Iris was born with a mild, sensorineural hearing loss in both ears…one in a thousand babies…needs hearing aids as soon as possible…will wear them for the rest of her life.”
My heart sank. I had literally never heard the word “sensorineural,” and while I knew old people sometimes lost their hearing, I had compartmentalized hearing loss into two categories: deaf and not deaf. Walking into that office, I was a brand new mom whose biggest concerns were finding a breastfeeding latch that didn’t cause excruciating pain or accepting that I might never sleep again. Now I was a brand-new, sleep-starved mom of a child who was hard of hearing. No one in our families had hearing loss; both my grandmothers lived into her 90’s with totally functioning ears. I followed all the pregnancy rules: no Sudafed, no sushi. So, why? Why her?
When she “failed” her newborn screening on day one, we were told it was common for C-section babies to have fluid in their ears. Not to worry. They would retest tomorrow. I returned to my other worries, including how to fatten up my tiny baby, walk without opening my incision and, (despite the fact that my husband and I had taken all the classes) that we had no idea how to raise a human.
She “failed” again on day two. And day three. This might actually be a thing. The tears started to fall. How was my baby already a failure at only 3 days old? Ironically, the only thing my husband had done in preparation for our hospital stay was to lovingly create a playlist of all our favorite songs to share with her once she was born. It saddened me to think she might not be able to hear them.
The nurse strongly encouraged us to return for the two week screen while reassuring us that our baby would be fine once the fluid cleared out of her ears, common to babies born by C-section. She did this all the time and 98% of babies “pass” at their follow-up. We were then released into the wild. Mastering how-to-strap-human-baby-into-car-seat pushed aside anxiety-over-hearing.
People joke about the insanity of the first sleepless weeks with a newborn, but it’s worse than I ever imagined, and it’s no laughing matter. But even mid-siege, we saw Iris “hearing” She startled at the dog’s bark, soothed to the sound of my voice, dozed off to my husband’s shushing. She could definitely hear. A “nap” sounded more useful than a follow up. Still, sleep deprived, we went. And, still, she “failed”.
I returned to my other worries, including how to fatten up my tiny baby, walk without opening my incision and, (despite the fact that my husband and I had taken all the classes) that we had no idea how to raise a human.
This “failure” taught us more—primarily, that this process is not as cut and dried as pass/fail and this terminology is terrible. Iris has a mild hearing loss, which means she can hear most things. That is why she was able to hear at home, confusing us further. She just can’t hear soft sounds, like faucets dripping or flies buzzing. (Frankly, that part sounds great.) She can’t hear whispers or unvoiced consonants—s’s, f’s, p’s, or h’s. She can’t hear the difference between cat and cats, which meant that hearing aids would be critical for strong speech development. Noisy classrooms would be a future challenge--I imagined the frustration of sitting in a noisy restaurant for hours, straining to hear over all the background noise.
The audiologist handed us a packet containing all sorts of statistics linking kids with hearing loss to poor academic performance, low self-esteem, and high rates of depression. My sobbing began just as I heard another family cheering through the thin wall between us. I heard the mother shout, “Yay! You did it!” I imagined them driving back to their normal lives as regular parents of a typical hearing baby. I so badly wanted us to be them.
I proceeded to cry for seven days straight. This wasn’t anything like the joyous movie I had directed in my head: going on morning walks with Iris, stopping to let people ooh and ahh, commiserating over poopy diapers with fellow moms and writing funny anecdotes in her baby book. While I adored her and was fiercely attached to her from the start, I had to force myself out of bed much less go for a walk. Though I was lonelier than ever before, I didn’t want to see anyone, especially my friends who I resented for their luxury worries of baby acne and cradle cap. I felt angry and bitter that this one-in-a-thousand-babies was Iris. It was grief. I was mourning the loss of my “perfect” child.
I had so many questions--swimming parties to sleep away camp; the game Telephone, concerts, or music lessons.
Would she climb into our bed on Sunday morning and be able to hear our giggles or share whispery pillow talk with her future husband like her dad and me?
Would she someday be able to hear her own baby cry in the middle of the night?
Would that baby have hearing loss, too?
Testing our Sanity
Even though I was a mess, I felt a tremendous amount of pressure to act quickly and thoroughly. These precious, fleeting minutes with our new baby weren’t spent daydreaming about what she’d be when she grew up; they were spent (on hold) with schedulers and insurance companies, in doctor’s offices and waiting rooms, with specialists and their endless recommendations.
Some days were excruciating, like the day she got her MRI and couldn’t eat past 3 a.m. She shrieked all the way to the hospital, up the elevator, into the waiting room, and into the prep room where I signed the paper acknowledging that, in rare cases, anesthesia might leave her brain dead. We watched her drift off to sleep, and left her with strangers in the exam room.
Or the day our ENT called as I was unloading groceries in the Whole Foods parking lot to deliver the results of her genetics panel after a 15 week wait. Turns out, Iris has one copy of a rare mutation that has never been reported anywhere in the world. It’s likely pathogenic (disease-causing), but--who knows? I scratched down the name of the gene on a shopping bag and went home to commence a three-week Google binge that began with the heart-stopping results linking the gene to Usher’s Syndrome, which is responsible for a majority of deafblindness in the world. Then, the day that we followed up with a geneticist who admitted that, no, Iris doesn’t fit the clinical criteria for Usher’s Syndrome but also that nobody can predict what this mutation means for her future. There’s still testing to be done if we opt to do so, but genetics is a whole other animal that brings up all sorts of big questions. Do we want to know her genetic make-up if it can’t be altered? Do any of us want to know what’s in store for us down the line? Will these results possibly help her down the line? My husband doesn’t want her to become a lab rat, and I want all the information I can get my hands on. We argued about it in the waiting room. There were tears.
There was the day we went to one of three pediatric ear specialists at the “best” children’s hospital in the city (the fourth in the country, for that matter), who seemed to know nothing about mild hearing loss, deferred to whatever the audiologist said, and basically had his nurse give us a Xeroxed checklist of all the specialists we’d need to see to determine if her hearing loss was part of a larger syndrome that could affect multiple organs.
Oh, and the day that same ear specialist called to tell me in a chilly monotone that Iris’ urine sample was extremely abnormal. We needed to schedule a kidney ultrasound since there are syndromes that affect both the ears and the kidneys. That was the hard day when my husband finally lost it. At that point, our pediatrician intervened like Superman to, literally, save the day.
Thriving Baby versus the Diagnosis
He listened. He calmly took in all of our concerns. While he wasn’t an expert on hearing loss, he was a compassionate human being who knew babies, moms and dads. He insisted on a second, more baby-friendly method of urine collection reasoning that if her urine labs were that abnormal, she would be very ill and running a high fever instead of happily smiling up at him. When the second test came back normal, we learned that the “best” children’s hospital in the city had contaminated the original sample through improper handling. That was the day we left the “best” children’s hospital.
Our pediatrician continues to remind us that Iris is our primary piece of data, not all the tests. He suggested from day one that we put our focus on bonding with our new baby and putting aside all the testing for now. In moments of worry, I hear him saying that she is a beautiful, healthy baby who happens to have a hearing loss. She is more than a hearing test--she is our thriving child.
An Unexpected Community
As time goes on, the days get easier. There’s no time to bury one’s head in the sand when a curious, adventurous little one demands playing, reading, talking, dancing; floating and swinging and strolling and zerbert-attacks; the sounds of the outside world: the birds and the breeze and the cars zooming by. Fortunately, with her hearing aids, she can hear all of those things. The day she got aided was the first day I didn’t cry. It hit me when I saw her already hearing better: this was a triumph, not a tragedy. This totally trumps the uncomfortable stares that I can’t help but notice or the well-intended comments from strangers (i.e. “those things in her ears just break my heart”). I have news for the world: my child is neither broken nor to be pitied. She is moving baby mountains every day. Like the day she smiled at me for the first time (which was the coolest thing that has ever happened in the history of the world until the next totally cool thing happened) or the day she discovered her own tongue. The day she started speaking in raspberries and showing joy through dinosaur squeals. The day she rolled onto her belly, splashed water, laughed, touched my face. There are so many glorious days to celebrate.
Even the day we sat in the audiologist’s office with our three-month old baby, hooked up (again) to all the wires and electrodes, and saw that she (still) had a permanent hearing loss; but, this time, it felt 100% okay. When the audiologist announced “no change,” I felt a tremendous sense of relief. And gratitude. I literally found myself thanking God for her hearing loss.
Funny, since nothing had changed: her genes, her labs, her hearing levels—all completely the same. Hearing aids were still exorbitant; not covered by insurance. Frequent trips to the clinics still took up our time; dead batteries, drying kits, and outgrown ear molds still took up our energy. She still had some mysterious gene that might affect her eyesight. She may be prone to ear infections. She may have progressive hearing loss. She may be bullied. She may feel like she doesn’t fit it. I also have a collection of non-hearing loss worries: school shootings, car accidents, SIDS. Her future is fraught with unknowns, but that’s the case for every parent, hearing loss or not. All parents worry.
But, frankly, I have hit my limit on despair. So, I have no other choice but to (learn to, try to, struggle to…) live in the present and focus on what I concretely know to be true today: I have a gorgeous, healthy, happy baby who happens to have a hearing loss. And, some days are hard, but you love your people, and you hold each other up. Paramount to reaching a place of acceptance has been a phenomenal support team of specialists, family, friends, and an unexpected community that has opened itself up to me. Connections to parents who have walked a similar path—a lifeline when I feel the isolation of being “the only one” in the daily crowds of “normal” moms and “hearing” babies—began with another mom from Hands & Voices. She landed in Holland several years before me and shared a comforting glimpse into the future. (Google “Welcome to Holland” now if you haven’t already done so.) Sure, this wasn’t the journey I expected, but it has been and will continue to be breathtaking in its own right.
No, none of the news had changed; but I had. Because I had the great honor of spending the last few months bonding with this perfect creature—this vivacious, busy, strong, alert, receptive, smart, curious, outspoken little person. The labels won’t determine how this kid turns out. As long as we love and support her unconditionally, this small girl, this mighty being, will write her own story; and, lucky for us, we get to be her parents. ~
Editor’s note: The author thanks Texas H&V Parent Guide, Jennifer Peterson, for encouraging and editing this submission. This article ran in the Fall 2014 issue of The Communicator.