Newborn Hearing Screen: A Piece of Advice

OK, so I'm 15 months late making this little PSA. I've been meaning to share this advice since the day Rilla was born—the day she failed her newborn hearing test.

Yup, that's right, she failed. Just like her brother had failed, three years earlier.

Hearing loss can run in families, you know. When the hearing-screen tech gave me the news, it came as a bit of a blow. To be perfectly honest, the first thing that passed through my mind was: Oh dear God, where are we going to come up with another five grand for hearing aids?

(Did you know that most insurance companies do not cover hearing aids, even for children? Don't get me started.)

But then I managed to collect my wits, or at least enough of them to ask some questions. Had she done the test in the newborn nursery? Yes, she had. Aha.

I had learned from our experience with Wonderboy that many newborns don't pass the initial screen in the nursery, especially in a NICU (as with Wonderboy, but not with Rilla) where there is so much ambient noise. Wonderboy was tested three separate times on his discharge day before they gave up trying and sent us home with instructions to have him re-tested as soon as possible, but not to worry, it was highly unlikely he really did have hearing loss, it was just all the background noise in the NICU mucking up the test results.

"Ask for the newborn hearing test to be administered in the quiet of the mother's room."

OK, in his case, it turned out NOT to be the ambient noise skewing the results; the kid really does have hearing loss. But still, that didn't mean Rilla's test had necessarily been accurate, and I wanted confirmation before leaping to conclusions.

I asked the tech if she could re-do the test, right there in my hospital room, where it was nice and quiet. I didn't even have a roommate.

The tech was kind and sympathetic, but doubtful. "Honey," she said gently—they always call me honey, these hospital personnel about to deliver potentially upsetting news—at least, the female ones above age forty always seem to—"I'm willing to give it a try, but this is a brand new machine, state of the art, and it's especially designed to NOT be affected by ambient noise. And with hearing loss in the family..."

"I know," I said. "But I think it's worth our time to try."

"Well, what you need to do is have her re-tested in one month."

I sighed and explained that my HMO would make me go all the way to Richmond, 80 miles away, for further testing (this I knew from prior experience), and it would be a big pain in the neck, and if there was any chance today's test wasn't 100% accurate, it would be a huge help to me to give it another try.

Now it was her turn to sigh, and you could see her thinking thoughts about how you have to humor these post-partum mothers, and she shrugged and said, "All right. We'll try. I'll go get the machine."

She wheeled in the contraption and attached the little sensors to Rilla's head, and stuck the thingamajig in her right ear. Then, while the test started running, the tech popped back into the nursery for a chart she'd left behind. When she returned five minutes later, she took one look at her State of the Art Machine and gasped.

"It's finished already! It took me 20 minutes to get a finish before!"

Me: "Finished, good?"

But already I knew it HAD to be good, because the way this test works is the machine sounds little clicks into the baby's ear, and the sensors record how many times a nerve twitches or something like that, in response to the clicks. You need a certain number of clicks within a certain window of time to get a "hearing is normal" result. If the twitches aren't happening, the machine will keep on sounding clicks until a biggish chunk of time has passed, and then you get a "hearing is not normal" report like the one Rilla had already been given.

A finish in five minutes meant the machine had already counted enough nerve-twitches to know that Rilla's right ear was working just fine.

The tech was openly flabbergasted. This is where this becomes a really satisfying story, because it is one of those rare times that an expert admits frankly, and with pleasure, that she was mistaken.

"I'm stunned," she said. "It's not supposed to be affected by ambient noise, but obviously it is."

I could have kissed her.

She tested the other ear, and that side too yielded A-OK results in under five minutes. Rilla's hearing was pronounced normal, and the stern document instructing us to take steps X, Y, and Z toward further testing was removed from her chart, ripped in half, and pitched into the wastebasket.

Of course, it's possible for a child who passes a newborn hearing screen to show signs of hearing loss later in life, and sometimes it is years before a parent realizes there is a problem. If Rilla had been diagnosed with hearing loss at birth, or six months later like her brother was, or at any point in the future, we would deal with it, and it would be fine. The point of my pushing the tech to re-test, and the point of this story, has simply to do with a tip that can save parents time and unnecessary anxiety. When the hospital wants to administer a hearing test to your newborn, request that it be done in the relative quiet of the mother's room or some other isolated place, not in the nursery.

The tech seemed somewhat dazed, but she was awfully sporting about it. She told me, "This is really going to change things for me. It usually takes me up to an hour to test each baby. I think you've just saved me a ton of time."

I can't tell you how much I appreciated those words!

But I appreciated being spared the drive to Richmond, and the stress of putting baby Rilla through further testing (stress on her, I mean), and the month or more of back-of-the-mind worry we'd have had to deal with while waiting for the next test, even more. I was able to take her home without any questions gnawing at me, and when I think back to that peaceful, happy babymoon,

I'm terribly grateful the tech was willing to honor my request.

Comments

[Jane]

I wish that they had had those machines when my second son was born, 23 years ago. We didn't find oout about his hearing loss (20 decibels) until he was 15 months old and randomly picked for a testing of equipment at the local university speech and hearing clinic. He wasn't talking yet, but as a second boy, he was still within normal limits...And he had enough hearing to react to loud noises. Add to that very good coping skills, like an ability to lip read (that he still denies) and we might not have known for another year that he couldn't hear very well. I wish we could have found out sooner and gotten his hearing aid and help with speech sooner; it was literally years before he completely caught up!

[Amy]

Thank you so much for posting this, Lissa. With BB#1 on the way (that's baby boy #1, lol), and hearing loss running in our family too, I want to be armed with all the info I can get.

Although it is true, my 7yo passed her newborn screening, and she does have a unilateral loss, which we *think* was congenital (due to malformed pinnae, etc). So who knows what happened there, lol. We didn't realize she had a hearing loss until she was something like 4 or 5!

[Jen]

I noticed recently when visiting the maternity ward to see a friend that they had a room devoted to hearing screening. This is a relatively newly redone maternity ward.

[Maria]

Excellent, practical advice!

[patty (awesmom on librarything)]

Melissa,
In California CCS should help pay for hearing aids, no matter the parent's income. I say should, because my mom retired 15 years ago.

From a daughter of a former CCS administrator

[Jennifer]

What wonderful news for you!
Your children are gorgeous. I have two boys and I love them dearly but I am a little jealous at your gorgeous daughters! LOL

[Meredith]

I'm so glad to hear it all went well, technology, sheesh!

[jenny-up the hill]

That is great advice! Gus was tested in the NICU and he bombed his screening. All of the gentamicin that he was given early on was ototoxic so he lost all of his hearing...profound bilateral hearing loss. That floored me when I found out because he "seemed" to be so responsive to sound. Further testing confirmed it though.

We were able to get assistance (in TN) from Childrens Special Services. They bought his first pair of hearing aids and then the replacement set when our bag was stolen at the airport! We would have never been able to buy Gus his hearing aids ourselves....and yes, insurance companies should be ashamed!

When Gus died, we passed his hearing aids onto a little guy in the CSS program...that made me feel good...

[J]

Wow. I agree with the two other commenters. $5k is a lot of money.

VA has one of the best alternative technology funding programs in the country. Visit RESNA.org for more info on AT funding in general.

Cali doesn't receive AFP federal funding, but there are consumer groups you can contact to help you get a free or reduced price hearing aid (or other AT device) for your son. Cali may also have a reduced interest loan program. (It's not funded by a Title 3 program, so I'm not sure how it works.) Check out ATnet.org

[J]

Wow. I agree with the two other commenters. $5k is a lot of money.

VA has one of the best alternative technology funding programs in the country. Visit RESNA.org for more info on AT funding in general.

Cali doesn't receive AFP federal funding, but there are consumer groups you can contact to help you get a free or reduced price hearing aid (or other AT device) for your son. Cali may also have a reduced interest loan program. (It's not funded by a Title 3 program, so I'm not sure how it works.) Check out ATnet.org

[Leah Lefler]

Good advice on the repeat testing! NY state automatically does a re-screen before they leave the nursery (if they fail). My little guy failed twice with an automated ABR system, then they called down the audiologist for a third test. He failed again, so we were sent home with instructions to return in two weeks for a FOURTH ABR screen. He failed at 35dB in both ears and at 40dB in his right ear. The left ear passed, but only after 11,000 "sweeps" (the test almost timed out). Now we have to go in for diagnostic ABR testing- we'll see what that reveals. This is a new frontier for us- no one in the family has hearing loss and there were no risk factors!

[Kate Pike]

Thankyou for the advice, I will send this on to my friend who is havig hearing issues with their 32 month son. Only problem is they live in England but hopeing the services will be the same there. Glad everything was ok in the end though, must have been very nerv racking!