If you’re a parent – what did you worry about when expecting your first child? Probably the standards – will all the regular bits be in good working order, will it be healthy and maybe, as a bonus, will it be gorgeous, too?
If you’re a hearing parent, you probably did not worry about your baby being born deaf.
And why would you? Approximately three in 1000 babies are born with some degree of hearing loss, so the odds are reasonably good that your child would be born ‘hearing’. Besides, chances are no one told you to add deafness to your worry list.
And I didn’t worry about it, either. I swear to heaven, even with my own hearing loss that wasn’t diagnosed until age two and a half, I don’t recall thinking about it during pregnancy. Perhaps it was because hearing loss didn’t ‘run in the family’ – although I now know that congenital hearing loss has many causes. A more likely reason was that I was having a wonderful, viable pregnancy after having lost two previous ones, and this issue just didn’t seem to matter.
But what I did worry about: how was I was going to hear the baby? I was frightened that my hearing would put my child in danger. What if I didn’t hear him cry, or burp, or call for me? What if he was lost and I couldn’t find him? And all those things did occur at some point, to some minor degree. The nicest gift the Hearing Husband ever gave me was reassuring me – as I blubbered about some near baby-mishap – that parenting is 50% luck. With three older children, he could say this with conviction. And sure enough, here we are seventeen years later, alive and accounted for.
The other night, my son came roaring into the room where I was settling in to watch a juicy episode of my favorite show, due to start any minute.
“I found a bunch of my baby pictures – let’s look at them together, Mum!”
What a choice to make – to look at baby pictures of your son, with your son – or watch zombies get smushed? I did what any loving mother would do.
“Ok, but make it snappy – The Walking Dead’s almost on.”
Looking at pictures of my chubby-cheeked toddler reminded me of another photo – a sleeping four month-old having an auditory brainstem response (ABR) hearing test. This was 1995, a few years before Universal Newborn Hearing Screening was introduced in Ontario, but because of my severe congenital loss, Joel was considered high risk. In his first year of life, he had three hearing tests.
For the first one, the ABR test that measures the brainstem’s response to sound, the baby must be asleep, so Joel had to arrive at the hospital sleep deprived. (The fact that I, the mom, was already severely sleep deprived was not good enough.) This meant keeping the baby up late, getting him up early and not feeding him his breakfast. Up to that point, it was stressful but do-able.
Until the drive to the hospital.
Have you ever tried to keep a sleepy baby awake? As my husband drove the car as fast as possible, I jiggled and wiggled Joel. He started to slip away into sleepy-land so I started singing, loudly. He smiled, his eyes rolled up in his head and he was gone. Luckily, he perked up at the hospital and when the little electrodes were placed on his head he smiled again and conked out. And that’s when it hit me.
What if Joel had hearing loss! There had been no signs in these early months, but seeing him lying there with things stuck to his head, the possibility that he might have my same lifelong hearing challenges shocked me into tears.
But his hearing was ‘normal’ and subsequent tests confirmed he did not have hearing loss. The infant distraction test (IDT) was more fun than the ABR. Eight-month-old Joel sat on my lap playing with a toy and when a sound came from a corner of the room, he would turn towards it and laugh at a mechanical monkey playing a drum.
If Joel had been born with hearing loss, I know that like other parents who receive the diagnosis, we would have been upset. But the good news is that intervention would have been immediate and we would have been able to make choices to give Joel the best shot at optimal communication, for effective language. And if I knew then what I know and believe now, we would have combined technical strategies with spoken language – as well as training in signed language. As my son grew up, I watched closely for signs of hearing loss, having him tested again at age eight. For now, it’s tickety-boo. Maybe he gets his good hearing, like his good looks, from his dad, but I’ve trained him to say, “Yes, I look like my dad, but I have my mom’s wit, charm and intelligence.” And he can say this with a straight face.
Raised by a hard of hearing advocate, Joel understands why he needs to protect his hearing and the consequences of noise damage. He took classical guitar for five years and could make the angels weep with the beauty of his playing, yet now he’s happier screeching out chords on an electric guitar and a wicked amplifier. When I get in the car after he’s been driving it, the radio volume makes me jump. So, once again, I must weep and worry.
Still, I’m grateful for newborn hearing screening. If you or someone you know is expecting a baby, make sure the child’s hearing is checked at birth. It’s the first step to a good life of language and communication.