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My baby didn’t pass his hearing test — now what?

Jennifer Amey is a writer and accessibility consultant living in Toronto with a kid the experts describe as "a mad genius." Emphasis on "mad."

One mom’s journey through the tough decisions that come with learning your child is deaf

When Harry was a baby, I thought I was the best parent ever. He was so laid back; I could take him anywhere — even noisy places that would make other babies cry!

Turns out, I wasn’t a parenting genius. Harry was deaf.

The tests

Every state and territory in the United States now has early hearing detection and intervention programs. Each program is different, but the basics are the same. The initial test can happen as early as a few days after delivery. It’s quick and easy. We did it at a regular checkup when Harry was a week old. Soft sounds were played in his ears, and the ears’ response was measured and recorded.

He didn’t pass.

“Don’t worry,” said the midwife. “The fan in here is noisy, we get lots of false positives. You don’t have to do more testing if you don’t want to.”

But we did. For the next test, we went to a public health unit. To be honest, the main reason we did it was to see our baby with electrodes on his head. Very science-fiction-y — a chance to look inside his tiny mind! Sort of.

Harry did not pass this test, either. “Don’t worry!” they said. Harry was getting over a cold; he was fussy and wouldn’t settle. His hearing was probably fine.

Next step was an audiogram in a soundproof booth at a hospital.

This was not fun. For accurate results, he was supposed to sleep through it. To make sure he slept, I was supposed to keep 3-month-old Harry awake for four solid hours before the test, and not feed him. I remember the bewildered look he gave me as I jostled him awake on the way to the appointment: “What gives, Mom? Most people want their baby to eat and sleep!” He must have thought I was crazy. Or just mean.

Even after failing both screenings, the news that he was deaf was a complete shock. I gave the right answers to all the questions the audiologist asked — “Did you have a ‘normal’ pregnancy? Were you sick?” No and no. “Did you have a ‘normal’ delivery? Does he respond to your voice? Does he babble to himself?” Yes! Of course he does! But the test results were undeniable — he’s deaf.

I cried in the car on the way home.

The choices

When you’re a new parent who hasn’t slept properly in months, making major life decisions isn’t daunting at all, right?

There are two basic options to choose from — hearing technology and speech therapy or learning sign language. We chose to hedge our bets and do both. Just in case.

Then came the choice between hearing aids and cochlear implant surgery. This decision was made for us; Harry did well enough with hearing aids that he didn’t need the surgery. Frankly, I was relieved. I could never even cut his tiny fingernails without panicking about blood loss, so the idea of any kind of surgery was way more than I could handle. Harry has worn hearing aids since he was 4 months old. They wrap behind his ear, with a custom-fit earmold that sticks right inside. He takes them off for sleep. Bonus: You can be as loud as you want, and not worry about waking the baby!

Next stop was the speech-language pathologist. It seemed crazy to take a tiny baby to “speech therapy” when he was too little to speak, but mainly it was for us parents to learn how to help him, make sure he was exposed to lots of language and check his development as he got older.

Harry did "Language Through Play" with a speech-language pathologist for an hour a week for four years. He loved it! From his point of view, it was games and stories. He had difficulty hearing high-frequency sounds like S, F, and Sh (also known as the four-letter-word sounds), so we read a lot of picture books about slippery snakes slithering softly over the sand and Freddy frog catching 54 flies.

We also saw a sign language consultant every week to help our whole family learn American Sign Language. Even though Harry turned out to be a talkative kid, I’m glad we learned ASL. Most hearing aids are not waterproof, so he needs to take them off for swimming and baths. And sometimes they get lost. And occasionally they needed repairs. Once, he swallowed one of his earmolds (on a long weekend, of course). We took him to emergency room in a panic. “Not to worry,” they said. “He’ll pass it in a couple of days, and then you can wash it off and use it again.” Um, gross. We got him a new one instead.

The present

We had lots people tell us our choices were wrong. People can be very passionate about why it’s important to only do speech or only do sign language. I would just nod thoughtfully and say, “Hmm, I’ll have to look into that,” and change the subject. Like any parenting decision, it depends on the needs of the child, and every child is different.

Now, Harry is almost 10. He struggles sometimes with being different and having strangers ask, “What are those things on your ears?” Sometimes it sends him into Hulk-smash mode, which is funny considering that Lou Ferrigno, aka 1970s Hulk, grew up wearing hearing aids too (he got into bodybuilding as a way of dealing with bullies). I was thrilled to find Cece Bell’s award-winning graphic memoir, “El Deafo,” which recounts her experiences growing up deaf. When I gave it to Harry for Christmas, he glanced at it skeptically and moved on to unwrapping the next present. But later that day, I found him reading it. He probably read it three times over the Christmas break.

I read it too. I would still like to see inside his tiny mind somehow. Knowing your kid will have such a vastly different experience of the world is hard to get used to.

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