Daughter just diagnosed with severe-profound hearing loss - please help!

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v_mom

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hello all, hoping to find any valuable information. my 19-month old daughter was just diagnosed with severe to profound hearing loss in both ears, she can hear 70 d in her right ear, and about 80 in her left year. although these are the results we got with the ABR, i feel that she does hear some speech, as she says mama, daddy, and a few other words at times. she also babbles quite a bit. although we are doing the steps to find out more about CIs, I'd like to exhaust all options first. the audiologist at the hospital doesn't seem interested in really trying HAs for her, and think CI is the only way to go. I'm not convinced. Any ideas on what type of HA might help her hearing loss? Please help, truly stressed.
 
The best advise I can give you at this point is to find another audiologist. Any audiologist that will not discuss all options with you is looking out only for their own interest, and not the best interests of your child and yourself.

And, while you are looking for a new audiologist, stick around here. The Deaf on this forum have a great deal to teach you about what it is to be a deaf child. Please, just stay open minded, and if you don't quite understand something that is said, ask for clarification.
 
First of all, it's not the end of the world, your child can do anything she wants except hear.

Do find an audiologist, but be careful for scams and ripoffs. Shop more than 1 before making an appointment and shop prices as well. Contact a local deaf school as they can help provide the information you need.

Last thing is for you and your child to learn ASL (American Sign Language), learning ASL greatly boosts literacy as well as speech (depending on hearing loss and child's willingness to learn).

Here's a video that shows the power of ASL even on a hearing child....

[ame=http://www.youtube.com/watch?v=7gSZfW4gVhI&feature=related]YouTube - ‪cute signing baby!...baby sign language‬‏[/ame]

It's amazing what ASL can do. Contact the video's owner SmarthandsCA
YouTube - ‪SmartHandsCA's Channel‬‏ as she can help you learn how to get started.

Yiz
 
I am not an audi, but there are still a lot of severe-profounder kids who get a lot of benifit from HAs. I actually have a 70 dcb loss myself. It's good she has some speech already. ...Actually wouldn't that be a sign that she would respond to aiding?
I would contact your state's Deaf School...Deaf Schools tend to have AWESOME AWESOME early intervention and early childhood programs. I don't want to appear biased or anything....but I do strongly feel that dhh kids have the right to be bilingal in both speech and sign. It can be done....That way she can function both with and without her hearing aid or CI.
 
I would suggest signing, too. Plus, 70-80 db as far as I know is NOT a profound loss, is it? If she has all frequencies she should have a good gain with HA. I know deaf people with a loss of 80-110, but with all frequencies, who can use the phone with their aids... So... Yes, your audi doesn't sound very smart at that point. Anyway before choosing surgery I'd definitely want a second opinion, and maybe a third one too. It's not something you can undo after you've done it, so taking a little time to think about it is necessary I think. I don't trust ABR either - I know a few who had flat ABR as kids and yet are able to hear with their aids... I don't know why it is so (I've always been told it's an "Objective test"), really, but I'd trust what you see in daily life more than anything.
 
Just to add, my friend Paul has a profound loss, and he was able to develop speech with hearing aids!
 
v_mom said:
hello all, hoping to find any valuable information. my 19-month old daughter was just diagnosed with severe to profound hearing loss in both ears, she can hear 70 d in her right ear, and about 80 in her left year. although these are the results we got with the ABR, i feel that she does hear some speech, as she says mama, daddy, and a few other words at times. she also babbles quite a bit. although we are doing the steps to find out more about CIs, I'd like to exhaust all options first. the audiologist at the hospital doesn't seem interested in really trying HAs for her, and think CI is the only way to go. I'm not convinced. Any ideas on what type of HA might help her hearing loss? Please help, truly stressed.
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I would like to say this - get some language into her immediately. Learn some sign language alongside with your kid. It will be a memorable experience.

BTW - I am a Deaf person, no CI's or HA's. I got rid of these years ago.
 
v_mom said:
hello all, hoping to find any valuable information. my 19-month old daughter was just diagnosed with severe to profound hearing loss in both ears, she can hear 70 d in her right ear, and about 80 in her left year. although these are the results we got with the ABR, i feel that she does hear some speech, as she says mama, daddy, and a few other words at times. she also babbles quite a bit. although we are doing the steps to find out more about CIs, I'd like to exhaust all options first. the audiologist at the hospital doesn't seem interested in really trying HAs for her, and think CI is the only way to go. I'm not convinced. Any ideas on what type of HA might help her hearing loss? Please help, truly stressed.
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Is she using her voice when she says mama, daddy or few other words? If she is, then it could be an indication that she is indeed hearing a little speech.

One way or another, she should probably get some hearing devices. And that at 19 months, the sooner, the better.

And if you're feeling pressured by one audiologist that there's only one option, you could see another. You may want to also get a 2nd opinion on the degree or your daughter's hearing loss anyway.
 
My hearing level is 60-80 db and around the board it is considered the severe range. Your daughter if confirmed to be in this range will be able to learn to speak, but it will take a lot of effort and perserverence on her part and yours too. The words she is able to say now as in 'mama' and 'daddy' are comprised of pretty much the only sounds she can hear. However, what would be easier for her, is to have access to Sign language. She will be all the happier for it and so will you because it will not be a struggle on either side. Sign Language is not that difficult to learn. Please view the short drama "My Song" on Youtube. (someone more technically apt can post the link for you). Or you can view it on the thread with that name. I was raised oral and mainstreamed and came out the other end of school as one of the 'success stories'. Now that I am older, I have regretted not having the access to Sign language when I was young. Even after 45 years or more of speaking (and quite well, as the average person on the street can not tell for the life of them that I am severely-deaf), however, even after all that time, I still find it an effort to speak. I personally have chosen in recent years, to learn sign language and prefer not to use my voice wherever possible. My advice to you: Giving her access to sign language is a must, it will give her the ability to communicate without the struggle.
 
v_mom said:
hello all, hoping to find any valuable information. my 19-month old daughter was just diagnosed with severe to profound hearing loss in both ears, she can hear 70 d in her right ear, and about 80 in her left year. although these are the results we got with the ABR, i feel that she does hear some speech, as she says mama, daddy, and a few other words at times. she also babbles quite a bit. although we are doing the steps to find out more about CIs, I'd like to exhaust all options first. the audiologist at the hospital doesn't seem interested in really trying HAs for her, and think CI is the only way to go. I'm not convinced. Any ideas on what type of HA might help her hearing loss? Please help, truly stressed.
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I am sorry about your daughter's hearing loss. Have her hearing re-check again somewhere away from hospital and ask for HA first and see if it will help her or not. Your daughter still has some hearing left and you do not want it to be destroyed by CI. CI should be last thing if all others failed. I have 21 months old grandson and he signs a lot. I hope you will learn some sign language and talk with your daughter in sign language. Communication between you and your daughter is really important right now. when I first learn sign language, I was very happy. ((((((((hug))))))
 
Hi, and welcome!

I'd second some of the advice you've gotten here, and recommend you see another audi as well: Even if your child had been diagnosed with profound hearing loss, above 90 db in both ears, no responsible audiologist should recommend CIs without first exhausting other methods, including a significant trial with sometimes multiple types of hearing aids.

My own child is extremely happy with 2 CIs, so I don't want you to think I'm anti-CI :) , but surgery is really only something you'd want to consider if you've determined that no access to hearing spoken language is possible via hearing aids, and then you can factor that in among many other variables when making the decision. My daughter didn't lose the minimal amount of residual hearing she had/has, but you have to go into surgery expecting that your child will lose that bit of hearing, and at a severe level, that's pretty significant.

At 70 or 80 db, she might be hearing loud sounds, but is not likely discriminating speech. you can take a look at what's commonly called the speech banana against your child's audiogram to see what she's likely hearing.

Although our hospital was wonderful in that they immediately recommended ASL -- urgently -- which we had already begun aggressively, we quickly found that they don't drive the process, you can't really go by what they seem interested in. You need to become very well informed and then you direct the path forward using the expertise of medical professional, educational professionals and early intervention professionals where necessary. They shouldn't be making decisions for you.
 
v_mom said:
hello all, hoping to find any valuable information. my 19-month old daughter was just diagnosed with severe to profound hearing loss in both ears, she can hear 70 d in her right ear, and about 80 in her left year. although these are the results we got with the ABR, i feel that she does hear some speech, as she says mama, daddy, and a few other words at times. she also babbles quite a bit. although we are doing the steps to find out more about CIs, I'd like to exhaust all options first. the audiologist at the hospital doesn't seem interested in really trying HAs for her, and think CI is the only way to go. I'm not convinced. Any ideas on what type of HA might help her hearing loss? Please help, truly stressed.
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Sounds like almost like my case. My right ear at about 68 dB but left ear at 92 dB. I was outfitted with a hearing aid at age 2 for my right eart but this was during the mid to late 1960s and have progressed since then. By your description I said the very same thing when I was at that age only because my Mother lifted me up and said those things in my right ear without a hearing aid. I'd say with the advanced technology of hearing aids today they become an extremely important thing to have to help with the spoken and listening language of English. And it looks like you are looking around for that right hearing aid. Ask an audiologist if you're trying to find the right kind of hearing aid. Early intervention on sound and language acquisition is important while still very young. Parents play a big role in this part in helping develop those skills. My mother was instrumental in my development.

While saying this I'd say that providing a foundation on signing is just as important, too. Some say cued speech can be just as valuable. Early intervention is important here regardless. It's up to the parents to decide which route is important and how to go about it.
 
I am surprised about the CI recommendation. Your child hears quite a lot if she is talking without HA.

You really need to change your audiologist to someone responsible. A CI for a child like yours at this point is kind of like cutting off your arm to cure a wart.
 
While it is always the parents' decision in the end, a parent should never, ever have to make a decision based on pressure and incomplete information. A parent should be provided all of the information, and allowed to make their decisions from an informed and educated perspective.

This, quite frankly, is simply another instance of the medical community doing what is best for them, supporting their own self interest, and restricting the information provided to parents in order to do so. Shameful. This audi's actions go beyond manipulation and cross the line into force.
 
Whatever you decide to do, I have three words for you: AMERICAN SIGN LANGUAGE

Please!
 
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I have profound hearing loss. According to my audiogram, I'm in the 100-110 decibal range. With my hearing aids, I can hear vowels but not consonants which is where lipreading comes in handy. Try investigating hearing aids first and start learning ASL immediately.
 
I second the advice in this thread as well, a lot of great advice! I am a HA user myself. I had an 85 db loss at birth (at least when diagnosed, anyway) and it's progressed to 110-115 now. So I'm considered the profound range now. But my HAs were great when I was a baby. Don't go the CI route just yet.
 
I'm profound hearing loss, on my both ears, in the range of 75 to 80 db loss. I wear HA all my life. I speak and hear very well. I start wearing HA when I was 3 years old and since then, I have grown tremensously with hearing all distinctive sounds. Now remember I'm over 50, with today technology are far more advance than when I was little. Today, with digital HA, I found many more new sounds, including words that I never heard of it before. Of course using CI will pick up more. So, it's more of assistive to hear things.
Now, let put this HA or CI aside... what more important is your family surrounding... and this deaf child... to have everyone to learn ASL. It's critical for family communications. It have profound effect to this child when he or she learn about family roles, family up bringing, family trait, behavor, knowing from wrong to right, communication between you and your husband and so on. It give lot of wealth of informatons to this child.
For me, I learn a lot from my family and this give me the path of what I want to be because I get lot of support from them. So, communication with family is very critical part... They know that I hate to be left out and I hate to be the last person to know what going on with my family.
 
Even if your child had been diagnosed with profound hearing loss, above 90 db in both ears, no responsible audiologist should recommend CIs without first exhausting other methods, including a significant trial with sometimes multiple types of hearing aids.

My own child is extremely happy with 2 CIs, so I don't want you to think I'm anti-CI , but surgery is really only something you'd want to consider if you've determined that no access to hearing spoken language is possible via hearing aids
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Grendel great post!!!!! I do have to say that I think we're not anti CI at ALL. More like it should be a last resort option.
 
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