Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, March 18, 2013

Hearing Loss

When Angela was 11 months old she was diagnosed with a high frequency hearing loss. This is the most common type of hearing loss among people who have Down syndrome.

Here's a look at the speech banana that will help you understand what that means. Please keep in mind I am NOT an audiologist. Although I understand how this all works, I'm not so great at explaining it! LOL

The numbers at the top of the chart that run from left to right measure frequency (Hz) of sounds. The numbers that run down the left side, from top to bottom are decibels (dB) - or volume - at which those sounds are produced. Looking at the chart you can see that high frequency speech sounds, at conversational volume, are produced at 25-40db, with low frequency sounds being produced in the low 50's.

High frequency sounds are those to the far right of the picture. They are sounds produced at high frequency - or pitch- these include p, h, g, k, t, f, s, th, ch, sh.

Angela's hearing loss is high frequency loss. When she was first diagnosed she tested at 45 dB for anything over 1000 Hz. That means that those speech sounds normally produced at 20 dB she couldn't hear without amplification. She couldn't hear any high frequency sounds produced at less than 45dB. That put her into the mild/moderate range of hearing loss.

Lets take a sample sentence and see what Angela can hear. How about a common direction? "Hang up your coat then put your backpack away."

Now lets remove the sounds we know Angela can't hear:

"ang u your oa en u your a a away."

This is why hearing aids for kids with even a mild hearing loss are so important. A child cannot learn to say sounds they cannot hear.

Angela has been wearing hearing aids since she was first diagnosed. Although she can be difficult to understand, she would be MUCH worse if she'd never worn them. In fact, she would not have intelligible speech at all! Well, when I went to Serbia to adopt Asher, one of Angela's hearing aids disappeared. She won't wear just one because it's very disorienting to having your hearing distorted on one side, so she's been without hearing aids while at home since then. She wears hearing aids at school, along with using an FM system, so she could at least hear in school. But over the summer, when she was without amplification at all, hear speech really regressed badly!

Insurance will only pay for hearing aids once every 5 years, and the insurance available on them is very limited so we had to wait until this month to get new aids ordered. Part of ordering new hearing aids is retesting her hearing. Oh my...Angela's hearing has gotten significantly worse. Take a look at that speech banana again. Angela's bad ear is down to 75dB, and her good ear is down to 55dB. Thankfully, with hearing aids, we can bring her hearing into normal range. We have one more week until we can pick them up!


Hevel Cohen said...

I have Waardenburg syndrome, and I've passed it on to all three of my biological children. Only one of them has hearing loss due to it, but we were fortunate that screening done on that tiny preemie at 48 hours old showed the loss and he was fitted withhis first hearing aids when he was 4 weeks old. It has made a world of difference!

I hope that Angela's hearing aids will stick with her for the next 5 years this time. :)

Leah S. said...

When Angela was born newborn screening was not mandatory, and wouldn't be for several more years. (I think it became mandatory here in 2000) However, because of my background as an interpreter and working with kids who had a wide variety of hearing loss combined with what I already knew about DS and prematurity, I requested she have an ABR done. Her screening was normal - for a premie. She had another ABR done around 6 months old during her first tube placement and it too was within normal parameters - for her adjusted age. By 11 months old and her first major surgery they were finally done adjusting for the four weeks!

Marianne said...

Very interesting! Thanks for sharing. As far as the audiologists can tell, Darya's hearing is fine. But when she was tested last summer she was not cooperative at all. Hopefully this year she'll do better. I know she can hear distant sounds like dogs and airplanes, and when I whisper, but it didn't occur to me about particular sounds like "sh", etc. We'll see!

Leah S. said...

Marianne, why haven't they done an ABR to test Darya's hearing? There is no reason to wait for a child to learn to be cooperative with testing. Young babies certainly are not, and they still get their hearing tested, by ABR!

Marianne said...

Thanks for the quick reply! What is ABR? When we first brought her home from Ukraine (2 years ago), they put us in a sound room where she responded to sounds in different directions. Then last summer, when we went again, they tried to put some sort of ear buds in her ears where she needed to stay still and quiet so they could test that way. Of course, she wouldn't have that at all. I was supposed to go back a month later, but we were out of state, and I didn't think she would be any more cooperative. So far, there doesn't seem to be anything indicating that she has any hearing loss, but I would still like to know for sure. She'll likely go again this summer when she turns 5.

Marianne said...

Okay, I did a quick search on ABR. That's probably what they tried to do last summer, but it would probably be better if she was asleep (though I don't know how that could happen)

Leah S. said...

No, what she had done was an OAE, which is different and another screening tool. The ABR, has ear buds in the ears, yes, but also has electrodes hooked to the head to measure the brain's response to sound. Kids are put to sleep for it because there cannot be ANY other sounds in the room at the time it is done. (adults will sit perfectly still in a silent room without being given directions. Kids aren't able to do that.)

Leah S. said...

OH, and they are put to sleep by IV sedation.

gps said...

I know this is an old topic, but I was wondering if there is a difference in comprehension between men's and women's voices, in terms of the frequencies involved? Or are "high frequency sounds" just as difficult for Angela to distinguish when spoken in a lower register?