PERFECT | Joanna Sharpless

After 283 nauseating days of pregnancy, twenty-three exhausting hours of labor, and three desperate hours of pushing, I reached out and grabbed my first and only baby from my doctor’s offering arms.

During the time I spent delivering babies in my family medicine training, I judged the parents whose first reaction was, “She’s perfect!” It seemed to me they could only mean the baby appeared perfect, and I wondered if they would have responded less enthusiastically had the baby looked different than the norm. It felt like a rather superficial way to greet a whole new person.

But holding my daughter for the first time, I understood why that word was quick to come to mind. It felt miraculous to see her little nub of a nose, her conch shell ears, her pearly oval nails, the tiny arches of her eyebrows. I, too, marveled at how I had grown such a textbook little human without a manual.

Many parents experience post-partum anxiety, but I had been so overwhelmed by anxiety during my pregnancy – worry about all the things that could go wrong – that after my daughter was born, I was flooded with relief. She was here, I was okay, and she was, indeed, perfect.

Therefore, I was uncharacteristically not at all apprehensive when they came to do her newborn hearing screen. Nor was I particularly alarmed when she failed, or as they say, “referred,” the first test. I knew plenty of new babies have amniotic fluid left over in their ears that disappears with time. But when she failed the hearing test a second time, a familiar bubble of fear began to grow deep in my belly.

My husband and I were advised to wait a couple of months before testing her again to give time for any extra fluid in the ears to resolve (plus, pediatric audiology appointments were hard to get). We had plenty of other things to keep our minds and bodies occupied as we learned to take care of our newborn. At home, we felt reassured to notice that she would startle at a dog barking or a truck roaring by. Clearly, she could hear. Right?

***

By the time her repeat hearing test arrived two months later, I had nearly convinced myself that her hearing was fine. Still, I craved reassurance. I wanted to recapture that feeling that everything was perfect.

To test a baby for hearing loss, they do what’s called an auditory brainstem response (ABR) test. Despite my medical training, I knew little to nothing about this test.

For the test to be accurate, our baby had to be fully asleep. We were advised to keep her awake and not to feed her for hours beforehand so I could nurse her in the office and then have her sink into a deep, satiated, sleep. This meant I arrived with a screaming, overtired, hungry baby and painful, swollen breasts. As we tried to rock her to sleep, the audiologist attached tiny stickers with electrodes to her head and stuck itty-bitty foam headphones in her ear canals.

My baby did not like this. Neither did I.

After she finally fell asleep, looking like baby Medusa in my arms, I did my best not to move an inch even though my frayed nerves were vibrating with energy. I could see the audiologist clicking away at the computer, watching my daughter’s brainwaves (or at least that’s what I imagined she was looking at). The appointment was two hours long. I tried not to search the audiologist’s face for answers, but I was overcome by the suspicion she was seeing our future mapped out on her screen, hidden just beyond my view.

When our baby began to stir, the audiologist stopped the test. She told us we would have to come back again for confirmatory testing, but the results so far suggested our baby had mild sensorineural hearing loss in both ears.

My brain processed some words faster than others. Mild sounded good. Loss sounded bad. Sensorineural triggered some distant board-exam-type memory – neural, nerve, something like that.

I was a doctor. Shouldn’t I know more than that?

“What does that mean?” I asked dumbly.

“It means she is hearing some sounds, but is missing quiet sounds like birds chirping, or the wind blowing through the trees,” the audiologist explained.

Those poetic examples were simultaneously helpfully clarifying, and immensely painful.

I looked down at my daughter and her beautiful, conch shell ears. Her ears that couldn’t hear the birds sing. Her ears that were missing the whistle of the wind through the leaves.

“Will it get better?” I asked.

“No, it appears that it’s most likely a permanent form of hearing loss,” she answered.

My own ears buzzed.

“Okay,” I finally said. “What do we do about that?”

“Well, she may need hearing aids to help her hear those quieter sounds and to learn the softer parts of speech and language,” the audiologist replied gently.

It was nearly impossible in my state of shock to absorb the full implications of this sentence. Language was supposed to be a given. Language was what you needed to sing a song, to ask for a cookie, to make a friend. To say I love you.

The audiologist told us she would step out for a few minutes

“Are you okay?” asked my husband, his face mirroring my internal worry.

To avert my eyes, which were filling with tears, I turned, my baby still in my arms, and stared at the row of hummingbird-colored hearing aids on the shelf. They looked huge next to my baby’s tiny ears.

“No,” I said. “Of course not.”

***

Several similarly torturous tests and months later, they confirmed our daughter’s hearing loss and shared that they had isolated, from a simple cheek swab, the offending gene. Because, of course, we actually had grown our baby from a manual – a manual spelled out in nucleotides. And her manual had two typos in the instructions for a protein in her inner ear cells.

We were fortunate we were doctors living near a top-notch children’s hospital and were able to get high-quality care for our daughter’s hearing loss. We were plugged into an early start program to provide screening and intervention, if necessary, to support her language development. We were introduced to an interdisciplinary team in a specialized hearing loss clinic. We were offered sign language classes, if we wanted them. When she was six months old, we received her purple hearing aids and learned how to painstakingly wriggle them into her tiny ears.

The professionals we interacted with were knowledgeable, kind, and eager to help. I would never tell them to be otherwise, but being on the receiving side of their cheerful counseling often felt jarring. I recognized and appreciated that helping deaf and hard of hearing children was their professional passion. But for us, it was a lived reality we hadn’t expected or chosen.

Well-meaning comments about how well her hearing aids fit, how great the nearest school for the deaf was, or how rewarding it was to learn sign language felt like tiny shocks to my heart. I didn’t want my baby to need hearing aids. I didn’t want to consider schools for the deaf. I hadn’t budgeted time in my back-to-work schedule to learn a new language. I was curious about and impressed by the deaf and hard of hearing community, but I also felt overwhelmed by the idea of learning about a whole new culture while simultaneously learning to be a parent for the first time.

By far, the most helpful thing I did was connecting – by phone, by video, in person, and online – with other parents of deaf and hard of hearing children. They helped normalize our feelings and provided tangible evidence that our daughter and our family could thrive. A few of the professionals we worked with were themselves deaf or hard of hearing, or had loved ones who were, and I was grateful when they were willing to go beyond their professional roles to share their personal experiences.

Though I have much more to learn, I’ve since come a long way in my knowledge about hearing loss. I used to think of deafness as binary – you were deaf, or you weren’t. I didn’t understand how nuanced the hearing spectrum is, how many causes of hearing loss there are, and how a few decibels difference can result in drastically different needs and outcomes for children. That means the challenges and victories we encounter can be totally different from another family’s. They will also be different for us today than they will be two, five, or ten years from now.

The other thing helping me, of course, was time. Though I felt immense pressure to learn everything about raising a hard of hearing child immediately, this was not realistic or healthy. I needed time to process my emotions, to focus on the many other aspects of becoming a new parent, and of course to learn about my daughter – who she is and what she needs from me.

***

Some of the lessons I’ve learned in the three years since her diagnosis, though hard earned, now feel almost obvious in retrospect.

First, no one, no matter how they appear at birth, is “perfect,” physically or otherwise. The DNA manuals making up our bodies are all ridden with typos, small ones and big ones. Some we find out about early, and some catch up to us late. Some we may never even know about. But the initial sense I had when my daughter was born that she was perfect wasn’t wrong. She is the perfect baby for me and my family, and the only baby I would wish to have.

Second, she’s different from her family, from us. When she was born, my husband and I were eager to look for reflections of ourselves in her tiny features. It was easy to impose our vision of who she would be and what her life would be like on her mysterious newborn blankness. I’ve since learned that one of the lessons of parenting is your children are endless surprises. She will be her own, unpredictable, wild human. While many parents learn this lesson gradually, it was a shock for us to so suddenly confront the reality that her path would be different than ours. But that doesn’t mean her life will not be as good, or even richer, than it otherwise would have been. Her experiences may change our lives for the better, too.

But the third lesson is the one I most wish I could go back in time to tell myself as I stood crying in front of those hearing aids in the audiologist's office. Here’s what I would say:

Right now, your baby is brand new to you. A minute ago, all you knew was the shape of her nose and eyebrows, and the sound of her cry when she’s hungry. Now, suddenly, you know this other scientific fact about her – that her hearing is “imperfect.” And because you know so little about who she is as a person, this one new fact about her might feel big enough to define her.

But soon you’ll learn what makes her smile. You’ll learn she loves pears but not avocados. You’ll learn that the feel of the cat purring makes her giggle, and that nothing can stop her from stomping in a muddy puddle. Gradually, this fact about her hearing will be one of ten, then one hundred, then a thousand important things about her. Her hearing aids will become as much a part of her as her dark wavy hair and her scuffed pink sneakers. When you see them, your heart will not catch, it will fill. Because the feeling of watching your child becoming just who she’s meant to be is pretty perfect.

Joanna Sharpless is a palliative care physician at the University of California, San Francisco, who searches for healing through reading and writing. She is a graduate of the Program in Liberal Medical Education at Brown University, earning a BA in English Literature and a medical degree. Her work has appeared in Time magazine, Pulse Voices, Academic Medicine, Journal of Pain and Symptom Management, and the Journal of General Internal Medicine. She lives north of San Francisco, where she loves to enjoy tasty pastries under the redwoods with her husband and daughter.

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