My 2-month old son has severe hearing loss

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jesse

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Hi everyone,

My wife and i just had a baby boy 2 months ago and he was recently diagnosed with severe hearing loss in both ears. It was a shock to both of us, but we're learning how to deal with it.

Our baby boy Evan is being fitted with hearing aids this Friday (Feb 1). I just wanted to know if anybody here has been through a similar situation with someone this age, and can share their stories and experiences with us.

If the HA's don't seem to be helping him then he'll be assessed to see if he's a candidate for CI. Obviously with a 2-month old it's going to be several months before we know anything.

Thanks,
Jesse
 
Welcome to AD, Jesse. I'm sure you will find many people here who are willing to share their experiences with you. I want to commend you for reaching out tothe deaf community as part of your search for answers. From listening to the experiences of deaf adults, you will gain a perspective on what it means to be a deaf child that the professionals are unable to give you. It is indeed a perspective that should be taken into account as you learn about your child, and about deafness.

The best advise I can give you at this point is to be patient, take your time making decisions, and follow your gut. Make sure that you create a visually enriched environment for your son from the beginning, and as the parent of a deaf son and a professional, I would urge you to look into learning ASL asap. Your child needs linguistic input from infancy on, and it takes time to adjust to hearing aids.
 
Hello! Welcome to AllDeaf! I agree with Jillio - I urge you to learn sign language. It's much easier for babies to learn than adults. There's some books that has 'baby' sign language that can help you communicate with your child. Babies can learn sign language before they can speak...now isn't that cool? 2 months is a young age at this point, but the more often you do a simple sign language like Mommy, Daddy, nap time, milk, etc. Your child will pick up on this.

Here's my personal experience from my mother's version (she wrote a novel about me):
When I was 2 years old in 1980, the doctors discovered that I was deaf. I was able to speak a few words before Mom found out that I was deaf, so ironically I was able to lip read. I would say, "Bobby" for "Mommy". (Look in the mirror and say both words in silence, and you'll see they both look the same on the lips).
Mom wanted to know what to do next. CI was not available, and not widely known at that time. I was fitted with hearing aids. They worked. Mom found a Total Communication school in northern NJ. She was encouraged from the school to learn the language of the deaf, sign language. Mom took sign language classes that was offered to parents at the school (they don't do that any more and that really really sucks). I grew up learning how to speak English fluently, and able to learn sign language. Although my sign language was more on a PSE level instead of ASL, I was still able to understand other deaf people regardless.

You have to decide what's best for your child. There's no "One right choice", or a user's manual on how to take care of a Deaf child. There's many different experiences from many deaf people, and not all of us are the same. Some struggle, some succeed wonderfully, some are angry at their parents' choices when they were young, and some are neutral. My other suggestion is to find an Deaf organization in your state and check out their experience first hand, talk to them, get all the information then make an informed decision.

I wish you best of luck in everything! :)
 
too early... my twin grandsons were thought as one profoundly deaf and other was HOH... doctor was wrong.... now they are 15 yrs old.. they can hear very well and speak... they were not deaf at all.....
 
I suggest you to wait at least 8 months to see if any of hearing would come back, it happen sometimes like profound hearing loss at birth but gained some hearing back and become hard of hearing or in rare case, hearing. Just to be 100% sure before going with CI surgery if hearing aid doesn't do enough, also I strongly suggest you to learn sign language and your son to learn how to speak and sign same times because I know a lot of deaf or hard of hearing people that raised to speak without sign wanted to learn sign later. Also it would help dramatically with language skill its more important for your son to know the language than to know how to speak because your son have whole school age ahead of him to learn how to speak so when he's on his own he can fit in and communicate with everyone easily
Wish you all the good luck there is in world :)

-Amy
 
Hello,

I am profoundly deaf myself. My wife is hearing and a teacher of the deaf. We both use sign language in the home. We have a 2 sons. Our second son passed the newborn hearing screening. At 6 to 8 weeks, we noticed something was not right with him. He was not responding to our dog barking or our older son yelling. Of course our doctor said to wait a month and get his eyes checked in the meantime. We began the process of contacting the audiologist and ENT. He was diagnosed with profound bilateral hearing loss after an ABR and ASSR test at 3 months. Still we were shocked and sad. He was fitted with hearing aids at 4 months and we began the process to get an implant for him. He is so profoundly deaf that even with hearing aids, he would not hear speech clearly if at all.

Keeping the hearing aids on was extremely difficult. He was still napping 3 times a day and the hearing aids fell off often. We used sign language from the beginning to make sure that he always had language. I don't know what your ENT and audiologist suggest. Some will tell you not to sign at all. Some recommend it. You will have to decide for yourself. In my opinion, knowing at least the basic signs a baby would need to know will most likely be helpful. (milk, eat, more, all done, mommy, daddy, etc.) Even hearing parents of hearing babies use it to facilitate communication. We feel that signing with him has really helped. He received his implant at 9 months and his initial stimulation at 10 months. He is now 2 years old. He has been in the early intervention program from the time he was diagnosed. He goes to an oral school 2 days a week for a few hours and receives private auditory verbal therapy 1 day/week. He is now able to understand most of what is said when he is spoken to and he speaks in 2 word utterances. He signs and speaks at the same time. He can identify most of the alphabet. He knows his colors, shapes and many other educational milestones that are typical for his age and even older. He is still behind in some aspects of language but he is doing very well we think. His speech is probably 50% intelligible to strangers. We are very happy with our decision and have no regrets whatsoever. Our next decision is whether to have his other ear implanted. We'd be happy to give you more information if you would like. Best of luck to you all.

Jon.
 
SxyPorkie said:
too early... my twin grandsons were thought as one profoundly deaf and other was HOH... doctor was wrong.... now they are 15 yrs old.. they can hear very well and speak... they were not deaf at all.....
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WOW!
I know when they did testings in the 70s and 80s, hearing tests were done at 24 months check up, hence why my mom found out that I was deaf at 2. I wonder if it has to do with the fact that when they do the testings, the audiologists depends on the babies' reaction to sound. So, yeah you're right, 2 months is way too young to determine that.
 
SkullChick said:
I suggest you to wait at least 8 months to see if any of hearing would come back, it happen sometimes like profound hearing loss at birth but gained some hearing back and become hard of hearing or in rare case, hearing.
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LadySekhmet said:
2 months is way too young to determine that.
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Waiting 8 months means 8 months of possibly no language. I don't think it's true to say that the hearing comes back and the child becomes hard of hearing or even hearing. Sometimes there is fluid in the ears when the newborn hearing screening shows a referral. That is why the ENT checks the ears to make sure they are clear before the testing is completed. By 2 months, fluid is usually gone unless there is an ear infection, once again determined by the ENT before testing. The earliest a child can be implanted is 6 months and still often not completed until 12 months because of FDA regulation. So this family has plenty of time to discuss and research before any decision is made.
 
J22 said:
Waiting 8 months means 8 months of possibly no language.
Click to expand...
Excuse me, I'm not trying to start drama but.... what you mean, "no language"? What is sign language then? Baby learn sign language to communicate before speaking and the child can learn language through sign language and continue to use even after received CI so the child can always have language if CI failed or external processor broke and wait for replacement and it will help a lot with reading, writing and learning, the CI won't makes sure the child will totally understand what teacher are saying with no visual or any kind assistance so if needed the child can have interpreter to understand and learn that way, so no delay in anything.
 
SkullChick said:
Excuse me, I'm not trying to start drama but.... what you mean, "no language"? What is sign language then? Baby learn sign language to communicate before speaking and the child can learn language through sign language and continue to use even after received CI so the child can always have language if CI failed or external processor broke and wait for replacement and it will help a lot with reading, writing and learning, the CI won't makes sure the child will totally understand what teacher are saying with no visual or any kind assistance so if needed the child can have interpreter to understand and learn that way, so no delay in anything.
Click to expand...

In bold above -- didn't you know that, communicating in sign language to the baby can decrease stress with your baby or whatsoever - it helps, really, if it doesn't matter if the baby is deaf or not.
 
SkullChick said:
Excuse me, I'm not trying to start drama but.... what you mean, "no language"? What is sign language then? Baby learn sign language to communicate before speaking and the child can learn language through sign language and continue to use even after received CI so the child can always have language if CI failed or external processor broke and wait for replacement and it will help a lot with reading, writing and learning, the CI won't makes sure the child will totally understand what teacher are saying with no visual or any kind assistance so if needed the child can have interpreter to understand and learn that way, so no delay in anything.
Click to expand...

Sorry if you misunderstood what I said or if I didn't explain my point correctly. I meant that if the baby can't benefit from hearing aids and there is NO SIGN LANGUAGE, then that will result in 8 months of no language. It would be good to start signing basic signs now until they make a final decision whether hearing aids work or they want to get an implant.
 
We learned our son Drew was profoundly deaf very early on as well, so I suppose our situations are at least somewhat similar. We spent a lot of time talking to people, reading, etc., and eventually went the cochlear implant route for various reasons. Much of it is documented on Drew's blog Turn On My Ears!

Your and your child's situation, your feelings or viewpoints may differ from ours, but you can take a look for comparison purposes if nothing else.

Best of luck to your entire family in deciding what is best.
 
Thanks to everyone for the replies so far.

Let me provide a bit more information about our situation.

He failed the new born screening test in the hospital twice, so they chalked that up to fluid in his ears and referred us to another testing facility. He was sent for another test at about 6-weeks old, the more advanced test where they monitor brain wave activity while different noises are introduced to him through ear phones (i'm sure you all know what i'm talking about). He failed that test as well and was then given a referral to an audiologist and ENT doctor. The audiologist that we saw is at Sick Children's Hospital in Toronto, Canada, where we live. He had a full battery of tests done, a few hours worth to be exact. Those tests determined that he has severe hearing loss in both ears.

Like i was saying, he is getting his hearing aids on Friday, my wife and i are looking forward to it. Thankfully they are being loaned to us on a trial basis, we just have to purchase new molds and batteries as required. If they are a benefit then we'll buy a new set. We aren't going to rush into any decisions about CI, that's not our intention. They have an assessment that Evan would go through to qualify for CI, and even at that point it's still our choice. We're hoping that the HA's will work well for him, and CI's aren't needed.

Here are some specific questions that we're wondering about:

I read alot of info that says he has to "learn how to hear". What does that mean? He's only 2 months old, don't babies have to learn how to hear either way, HOH or not?

When a noise is heard through a HA, can you tell which direction the noise is coming from?

If the hearing aids work for him, and he's able to hear at a reasonable level, will he be able to speak? I know that's a tough question to answer, and i know that its also almost impossible to answer, but it makes me feel better asking it.


That's all i can think of right now. Thanks again. :)
 
jesse said:
If the hearing aids work for him, and he's able to hear at a reasonable level, will he be able to speak? I know that's a tough question to answer, and i know that its also almost impossible to answer, but it makes me feel better asking it.
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This question relates to the "speech banana". If the aids are amplifying the sound to a level high enough so that he hears in this "banana", he should be able to understand speech, and therefore should have a good opportunity to speak well. Here is a post we made when Drew got his hearing aids, which unfortunately were not working very well. There is also a link explaining the "speech banana".

Hope it helps in some way.
 
Hello Jesse :wave:,

Welcome to Alldeaf, Thank you for provide more information about your deaf child's hearing loss and the tests that were done. Looks like you're doing great!!! but I do have one question are you plan on learning sign language?

It's so good to see some hearing parents back on this forum again.
 
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LadySekhmet said:
WOW!
I know when they did testings in the 70s and 80s, hearing tests were done at 24 months check up, hence why my mom found out that I was deaf at 2. I wonder if it has to do with the fact that when they do the testings, the audiologists depends on the babies' reaction to sound. So, yeah you're right, 2 months is way too young to determine that.
Click to expand...


Yes my twin grandsons had been tested since they were 3 months old... and few tests throughout next couple years... and every tests stated that one of them were profoundly deaf and other were HOH.... again they were wrong... they were not deaf at all.... even tho I was born HOH.. my daughter was born deaf....

The reason I did not believe Doctor.. because i had two hearing aids on.. i was in the bathroom watching boys in the bathtub playing while my daughter was in other room getting clean clothes for boys.. I heard both of them blahing blah to each other..I knew they can hear very well...
 
You have to decide what's best for your child. There's no "One right choice", or a user's manual on how to take care of a Deaf child.
Click to expand...
On the other hand, I think that since it's hard to tell how well a particular kid will respond to a particualar methodology, it's important to go whole hog for early intervention, and go with a "full toolbox" approach.
One thing I would do is contact your local School for the Deaf or Deaf ed program and see what's out there. Get him in speech therapy, but also enroll him in Sign programs. That way he can choose which method he wants to use to communicate. Also, if he's not fablous at speech, he won't be behind language wise.
It's perfectly possible to do a "combined" approach, so he gets the best of both worlds!
 
deafdyke said:
On the other hand, I think that since it's hard to tell how well a particular kid will respond to a particualar methodology, it's important to go whole hog for early intervention, and go with a "full toolbox" approach.
One thing I would do is contact your local School for the Deaf or Deaf ed program and see what's out there. Get him in speech therapy, but also enroll him in Sign programs. That way he can choose which method he wants to use to communicate. Also, if he's not fablous at speech, he won't be behind language wise.
It's perfectly possible to do a "combined" approach, so he gets the best of both worlds!
Click to expand...

Hey... you are way off..... that baby is only 2 months old... too earlyl to decide if he is really deaf.... the mother can make some researches on deafness and sources... doctors does make mistakes... you dont know everything...
 
Welcome to AD. I hope you find a group that will help with all your questions. We don't all agree on everything except one thing - the child comes first.

I am the deaf individual. When my daughter was born nine years ago, she passed the newborn test. I did not feel comfortable until I had my audie test her. I even did yearly test until she was 4. My daughter has normal hearing and always did. The test were just for me.

Enjoy your wonderful newborn. I hope everyday is filled with joy and excitement.
 
Jesse,

First of all...welcome to AllDeaf and I am so glad that you came in here for information. While I agree that not every deaf person is the same but I do know this...every one of us needs language. Since your son is so young, there are a lot of decisions to be made that's for sure. I would never know what it is like cuz I am deaf myself and have two hearing kids.

I grew up orally without sign language despite having a profound bilateral hearing loss of 120 dB. I was trained to make good use of my hearing aids. I can even make out a few words without lipreading but that has to be in an extremely quiet setting and requires my full concentration which isnt realistic at all time. I grew up relying on lipreading more than my hearing but my HAs did help with my lipreading. When they are off, lipreading became much more difficult.

My brother was born with the same hearing loss as I was. However, he didnt benefit from his HAs at all despite hours of speech therapy at the same oral deaf school I went to. After 5 years of struggling, my mom finally sent him to the Deaf school where he learned ASL and just took off.

I remained in mainstreamed without any exposure to ASL. It was very very difficult cuz I missed out on a lot. People assumed because I could speak so well, I could hear well. Some people with severe hearing loss can learn to speak well. The downside to that is that we miss out on a lot.

I learned ASL as an adult and because of how easy communication became for me with ASL, I wish I had both growing up.

With my HAs, I can hear voices, tell whether it is a man, woman, or child speaking, can hear alarms, sirens, engines, knocking, music and so much more. What I cant do is understand speech without lipreading and localize the sounds. I cant tell where the sounds come from.

My deafness was diagnosed at 7 months and I was fitted with hearing aids since then. I cant live without them. My brother quit wearing them when he was a child cuz they gave him headaches and the sounds were too annoying for him.

I agree with many others, learn ASL asap so your baby can have linguistic input for language development.

Hope that helps!

Congrats on your baby. They are precious, arent they? :)
 
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