Specific request: born deaf implanted or not as babies please!

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Tristen

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Hi, I'm a hearing mom of a deaf daughter. She is 6 months old and was born profoundly deaf in both ears. Of course, the ENT and audiologist have brought up her getting cochlear implants around 1 year old.

I've done a TON of research and I'm going back and forth on the decision. I see a LOT of pros and cons on each side of the spectrum. There are days I definitely feel my decision is NO, and then other days I feel the opposite.

I'm specifically looking for personal experiences from people who were BORN deaf, not late-deafened, whether implanted or not as babies. I would like to hear perspectives from those individuals only. I definitely don't want this to be another post about how the medical companies are the devil and its child abuse, etc. I don't even want to hear from parents. I would really appreciate input from those individuals who were born deaf, in which they don't know what true sound is, like "normal" people hear, and how they felt about being implanted or not.

If you were implanted as a baby, or even as a child or a teen, do you think the decision your parents/guardians made was the best decision for you?

If your parents/guardians decided NOT to implant you, are you spiteful, or do you wish they had?

Just any input from those d/Deaf individuals would be so appreciated.

I know, ultimately, it is my decision. And as I said, I'm doing lots of research, but its hard to find info from anyone other than the parents, stating it was the best decision they made, or from medical professionals who tell you why its so important and time is of the essence, etc, etc.

Just as a point of reference, my husband and I are learning ASL. She WILL know ASL first and foremost. Even if our decision is to get her implanted, we will NEVER stop teaching her ASL. I plan to fully emerge her into her Deaf culture, anyway that I can.

TIA :)
 
That's a pretty tough decision and you're probably aware you're not the first person with this issue. Have you tried using google search: https://www.google.com/search?q=sit...9i57j69i58.10575j0j7&sourceid=chrome&ie=UTF-8

My 2 cents on this is to give the child hearing aids first and let her grow up and leave it up to her if she wants to get CI's or not. The problem with CI's is that it's a non-reversible procedure and it's not 100% guaranteed to restore hearing. I probably never will do CI's because my hearing is pretty shot anyway and even if I get one, it won't offer much improvement over powerful hearing aids. Plus who knows the technology might improve so that by the time your daughter is older an new technology will blow away CI's.

Hope that helps, good luck!
 
I've got a moderate hearing loss, so not a candidate for CI but was raised around the Deaf community and lots of Deaf children with an without CI. My opinion is: yes to the CI, but if she doesn't like it she can remove it and will already have a solid grounding in ASL. Otherwise it will be considerably more difficult for her to learn language if you wait until she can choose. Was discussing this with a few Deaf friends (there was a documentary aired recently about adults getting CI)- all who went for implants in later life. One almost gave up on it several times and took 7 years to be able to interpret environmental sounds (no speech understanding after 8 years), the twohad reasonable understanding after about a year but still struggle with speech. A fourth has only just got one but is absolutely loving experiencing sounds she's never ever heard before and puts it on first thing in the morning and delays going to bed so as to have more time to listen.

Two of them view themselves as deaf rather than Deaf and were raised orally. The third views herself as Deaf and was very opposed to CIs initially and refused them for years but decided she had nothing to lose. She would love the opportunity to get a second one now.

My old school friends (different to above) are still very much involved with BSL and see themselves as Deaf, but this seems strongly linked tom opportunity to be involved with the Deaf/signing community. I know others who don't learn BSL and don't see themselves as Deaf. I don't personally know anyone who resents getting one but all the people I know are relatively young (or got them later in life) so had better technology than the very first ones - though all say they struggle in situations with no sign.

For balance, I do know other people who would never ever get one and have no desire to wear hearing aids. For what it's worth, all seem happy. The only people I know who seem unhappy and deaf are those who never learnt to sign and are hearing aid users.

Here documentary about people who had their CIs removed/stopped using them: http://www.bslzone.co.uk/watch/ive-unplugged/
 
Hmm..

I am born deaf.. profound hearing loss- hearing aids since age 2. Aside from not really getting language until I was 2 (taking care of the eyeballs was first lol), somehow I managed ok in the oral side of things but doesn't mean I was happy or unhappy. Coulda been better...learned ASL at 18- so now "bilingual" lol.

Do I think they made the best decision? I don't know. For the time period they made that decision it was sort of the best... ASL vs Oral was at it's strongest around then plus the deaf school they took me to for evaluation rejected me (something about 'mental retardation' and/or "we don't work with multiple disabilities") cemented their decision it seems.

Do I feel spiteful not having the CI (if it had been available at the time)? No...not at all. I may be more upset that my parents didn't learn sign but there were a few factors why they didn't (not important for here). I think at one time I did ask my father or he mentioned it (when I was an adult)...about getting a CI for me if it had been available. He said no. Part of the reason was I'd already been through enough surgeries (9 total for the eyes before 2). Having a CI is more or less akin to hearing aids...maybe better sound quality...:dunno: so having that technology and ASL is a pretty well rounded 'tool box' right there. One thing that does kind of scares me off of CI is that once it is done...if you choose not to wear it later or find that it isn't working out for you, you have zero hearing left so cannot use hearing aids either.

Like A Nihilist said... it is a tough decision. I don't envy any parents that deal with it either.

I also know many d/Deaf who have or don't have CIs. One of my closest friends from Gally just got a CI- which is kind of funny... she grew up oral with hearing aids... during Gally and most of her adult life she refused to even wear her hearing aids. Last few years she went back to it and decided she wanted to use the CI. Still uses ASL as far as I know. I know of at least one deaf-blind person I met there who got a CI- more for environmental sounds-->safety (and presumably to be better aware around her children).

My suggestion-- start with hearing aids and if that doesn't seem to work then look into CIs.

Like A Nihilist- I don't want to get a CI- have had way too many surgeries in my life and not eager for any more currently lol. Doing...okay with my current pair of aids though I'm sure I'll be maxing them out (if not already). Future technology is definitely something to consider too.
 
Man, I really thank all of you for your thoughts and input. I should have said in my original post, she does wear HAs, both sides, for 2 months now. She is still very young, but my husband and I don't think she gets any benefit from them, but again, she is too young to really "tell" us. If I do see a response or she turns her head at all, its when we scream at the top of our lungs or bang the cupboards REALLY loudly. And even then, its not every time, more like 30% of the time. I'm currently reading books about raising and educating a deaf child, parenting a deaf child, etc, but my next step is to actually watch a cochlear implant procedure.
 
I wasn't born deaf, but I lost my hearing at the age of 2, so I don't remember natural hearing at all. I had hearing aids for 10 years, then I got implant at 12 - my parents knew about it since I was around 6 years old, but were scared as it was a new technology at that time in my country (in 1993), so they decided to wait if it proves successful. It did, so when I was 11, we started the process of getting the CI. Since I was big enough to be involved in the decision, they of course asked me if I wanted it. I was all in "yes, I want it" :) It's been 17 years with my CI now and I have absolutely no regrets, I'm glad my parents told and asked me about it and that we did it. The only regret I could theoretically have would be "why didn't we do it earlier?". It makes the communication way easier, it allowed me to learn foreign languages, study abroad, meet many awesome people in our CI users organisation and much more.
 
I was born profoundly deaf. I started to wear hearing aids when I turned 18 months. Before that, I couldn't wear them due to nasty ear infections. Had to wear tubes for almost a year. They bled out literally. I had no memory of that. My parents decided to leave my decision to me whether or not I want to wear CI. I had years of private speech therapy learning how to speak and listen to the sound. I can hear a dog outside barking or my stupid cat makes high vocals getting my attention. I can hear computer hum or the sound of typing my keyboard. I can hear my son's cute sounds. My parents had to make sure I wore hearing aids daily, so my brain can learn and recognize those sounds. Carry conversation with my dad was a challenge due to his thick accent. Very thick accent. He knows a couple of signs. I applaud for you and your husband to learn ASL, so you guys can carry conversation with your daughter. She is very lucky to have you. I dont know how old your daughter is, but I have to warn you toddlers can lose hearing aids. When I was a little girl, my mom asked me where my hearing aids were and I had no idea. She found my hearing aids hanging over the fence. Whoops. I had no idea how it happened. ;)
 
Tristen said:
Hi, I'm a hearing mom of a deaf daughter. She is 6 months old and was born profoundly deaf in both ears. Of course, the ENT and audiologist have brought up her getting cochlear implants around 1 year old.

I've done a TON of research and I'm going back and forth on the decision. I see a LOT of pros and cons on each side of the spectrum. There are days I definitely feel my decision is NO, and then other days I feel the opposite.

I'm specifically looking for personal experiences from people who were BORN deaf, not late-deafened, whether implanted or not as babies. I would like to hear perspectives from those individuals only. I definitely don't want this to be another post about how the medical companies are the devil and its child abuse, etc. I don't even want to hear from parents. I would really appreciate input from those individuals who were born deaf, in which they don't know what true sound is, like "normal" people hear, and how they felt about being implanted or not.

If you were implanted as a baby, or even as a child or a teen, do you think the decision your parents/guardians made was the best decision for you?

If your parents/guardians decided NOT to implant you, are you spiteful, or do you wish they had?

Just any input from those d/Deaf individuals would be so appreciated.

I know, ultimately, it is my decision. And as I said, I'm doing lots of research, but its hard to find info from anyone other than the parents, stating it was the best decision they made, or from medical professionals who tell you why its so important and time is of the essence, etc, etc.

Just as a point of reference, my husband and I are learning ASL. She WILL know ASL first and foremost. Even if our decision is to get her implanted, we will NEVER stop teaching her ASL. I plan to fully emerge her into her Deaf culture, anyway that I can.

TIA :)
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If you private message me, I can put you in contact with a number of adults who were implanted in early childhood (3-5 years old) and teens who were implanted at closer to 1.
 
LoveBlue said:
She is open to not having her daughter implanted and raised deaf/Deaf, so no, that does not necessarily make her decision easier.
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No, what I meant is that if her daughter had significent use of HAs, and they were still reccomending CI it would be harder to make the decision. B/c it's clear that she's NOT getting all that much benefit from HAs. So a CI is the next logical step. If she got some (ie some speech perception) benefit, that would make her decision harder.
 
deafdyke said:
No, what I meant is that if her daughter had significent use of HAs, and they were still reccomending CI it would be harder to make the decision. B/c it's clear that she's NOT getting all that much benefit from HAs. So a CI is the next logical step. If she got some (ie some speech perception) benefit, that would make her decision harder.
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The big thing is....
Hearing Aids Amplify the sounds, if you have a frequency deafness they don't work as it only amplifies the frequencies.
CI's are wired directly to the auditorial nerve so basically feeding the sound ( electronic signals) directly to the brain.

Since the brain hasn't heard these sounds before, it takes time for the brain to rewire itself and learn this new sound. I know from experience, Ive never heard birds in my life, or frogs, I couldn't make out what the sounds were but once someone told me that's a bird, that's a frog, my brain connected the 2 and it was good to go. Its a learning process...not magic.
 
deafdyke said:
No, what I meant is that if her daughter had significent use of HAs, and they were still reccomending CI it would be harder to make the decision. B/c it's clear that she's NOT getting all that much benefit from HAs. So a CI is the next logical step. If she got some (ie some speech perception) benefit, that would make her decision harder.
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No, a CI is NOT the next logical step. It's still a decision between raising her daughter deaf/Deaf only or giving her daughter sound in addition to ASL and immersion in deaf culture.
 
@Tristen as a hearing parent myself and without wanting to go against your request, if was my kids having had 2 babies, I'd say don't get a CI, if she wants it later on she still can. allow your baby to enjoy her childhood without having to work 24/7 for hearing sounds
 
LoveBlue said:
No, a CI is NOT the next logical step. It's still a decision between raising her daughter deaf/Deaf only or giving her daughter sound in addition to ASL and immersion in deaf culture.
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Good point. There are still some " voice off" Deaf of hearing kids after all, and she does have to consider that possibilty. However that's also pretty unusual.. But then again, it's also hard since she's on the level where the benifit from CI is a question mark. (ie didn't have the advantage of progressive loss, or some speech perception with aids) Not all kids who are implanted reach HOH listening levels.
 
Mieke said:
@Tristen as a hearing parent myself and without wanting to go against your request, if was my kids having had 2 babies, I'd say don't get a CI, if she wants it later on she still can. allow your baby to enjoy her childhood without having to work 24/7 for hearing sounds
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the later you get them, the harder it is to learn for some. The earlier they are implanted the better the brain has to rewire itself. Like Myself I never knew ASL and learning it now is a challenge.
 
@sonocativo its my point of view, its a very fragile choice to make

And I don't oppose CI's I just feel that a baby should take its first steps in the world without that added risk and surgery that is not lifethreatening. Note that in this case the parents want to learn ASL and want to communicate in ASL with their child.

@Tristen I apologise, since it's not my place to comment on this, either way you will be doing what you as parents think is best for your baby
 
I applaud the OP for fully emerging her daughter into Deaf Culture and ASL, that is the most important part in socializing with other Deaf people.

The CI will always be a sticky part but I would strongly suggest that the child grows up and be old enough to make their own decision if they want to wear CI. There is always 50/50 whether it will work or not... it's like roll the dice and take the risk part.
 
A Nihilist said:
That's a pretty tough decision and you're probably aware you're not the first person with this issue. Have you tried using google search: https://www.google.com/search?q=site:alldeaf.com+baby+cochlear+implant&oq=site:alldeaf.com+baby+cochlear+implant&aqs=chrome..69i57j69i58.10575j0j7&sourceid=chrome&ie=UTF-8

My 2 cents on this is to give the child hearing aids first and let her grow up and leave it up to her if she wants to get CI's or not. The problem with CI's is that it's a non-reversible procedure and it's not 100% guaranteed to restore hearing. I probably never will do CI's because my hearing is pretty shot anyway and even if I get one, it won't offer much improvement over powerful hearing aids. Plus who knows the technology might improve so that by the time your daughter is older an new technology will blow away CI's.

Hope that helps, good luck!
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That's true about losing the residual hearing is permanent after CI surgery, but CI could surgically removed if you have medical issues that related to CI or require full MRI scan.

The insurance will pay for medical necessary, but not someone saying that they simply dislike CI and want to be removed for no reason.

I heard about stem cell could cure the deafness to make CI obsolete and I don't mind with stem cell to cure the Usher Syndrome, that all I care.
 
Tristen said:
I'm specifically looking for personal experiences from people who were BORN deaf, not late-deafened, whether implanted or not as babies. I would like to hear perspectives from those individuals only. I definitely don't want this to be another post about how the medical companies are the devil and its child abuse, etc. I don't even want to hear from parents. I would really appreciate input from those individuals who were born deaf, in which they don't know what true sound is, like "normal" people hear, and how they felt about being implanted or not.

If you were implanted as a baby, or even as a child or a teen, do you think the decision your parents/guardians made was the best decision for you?

If your parents/guardians decided NOT to implant you, are you spiteful, or do you wish they had?
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As born profoundly deaf due to Usher Syndrome (not found about deaf until 19 months old), sure, I can answer your question.

I personally rather to let a child to make decision with CI, not parents. It isn't CI that frowned the deaf ASL communities, but it was oral language alone. If you are CI user and fluent in ASL so you are safe in deaf ASL communities with little or no backfire. I went thorough with Gallaudet, even with permanent scar, no one care about me, but sometime, some people questioned about my head.

My parents forced me to receive an implant when I was 8 years old after HA and FM didn't work, but I had speech therapy for years before receive CI with little to no success. Of course, my parents didn't make a best decision and they ignored my writing skill so continue with speech therapy until I went to deaf school in August 2000, so my parents agreed to permanently stop all speech therapy after I had no success. My parents realized that my writing was abysmal because no care about my writing, so all priority in speech and language class moved from oral language to written language. Those classes at deaf school see written as most important, but oral language is usually reserved for HoH and deaf students who have success with oral language.

My parents admitted that received CI devastated the relationship between me and my parents, so my childhood went from sweet to extremely sour after CI surgery.

It is depends on individuals - they have different abilities and tendencies. Some CI users can talk very well, some CI users can talk fairly, some CI users can talk little and some can't talk at all. Don't relies on statistic because your child may be different from result, or may not. You have to find out after your child receives CI. I don't believe that learn ASL discourages from learning to use oral language, but some doctors and audiologist said so.

The babies may not remember if they receive a CI, but for older children, it is depends on their personalities, some of them hate to wear HA. I don't recommended you to force if they are child and refuse to receive a CI. If you have baby, that's up to you to make a decision. It isn't too late to make a decision since your child have another chance, even it is possible to receive a CI with speech therapy if you are adult with strong tendency to oral language , but it will take much longer than baby. For me, I rather to do nothing and don't want to hear the sounds at all.

Sure, there are a lot of deaf people with strictly ASL only have success with their life, based on my experience at Gallaudet. For me, I could be successful by now, but unfortunately, my medical issues interfere with my life and school, so I'm on medical leave right now. I wish that I could went when I was 18 years old so I can blitz and finish the college quickly.

My statement is part of my opinion and experiences, so I'm not interest to debate about CI since OP want know about my opinion.
 
As a hearing impaired adult, this is what I have witnessed and learned. Cochlear implants need to be replaced -- updated every so often. They do not provide a permanent solution and if used, they can cause a person to lose their disability payments & handicapper status.

It sounds like her hearing aids may not be as helpful as they should be, you really need to go back to the place where you purchased them, demand a hearing test, see the results, and then decide how to handle this situation. Also because of her deafness, please do not limit her ability to communicate -- get her into ASL learning groups and also when she is able to orally communicate, lip reading courses.

Like Tristan said, deafness has its quirks, some of us like the silence that it brings. I like taking my hearing aids off when I am home. While working in a school I do find the noise level sometimes gets louder than I would like, and that causes a little confusion with my ability to discern what is being said. Yes some hearing aids drown out the background noises a bit, but nothing is perfect. Give your baby a chance, let her live within her own deafness, first. Let it be her choice. Another side effect of the cochlear is that too much noise is coming in and for some of us, that in itself is unsettling.

As an added note, when we don't hear everything, our social development might not be at the same level as that of a hearing person because of what we miss. Make sure your daughter has friends that share her hearing problems, that will help with her social development.
 
Nita Thomas said:
Cochlear implants need to be replaced -- updated every so often. They do not provide a permanent solution and if used, they can cause a person to lose their disability payments & handicapper status.
.
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you are soooooo wrong on so many levels it aint even funny, where do you get your info?
The implant is permanent. The processors, you are eligible for an upgrade every 5 years ( covered 100% under medicare and most insurances)
and no one loses their disability because of getting a CI, you are still Deaf.... You need to do some serious fact checking before you make such a bold statement. SMDH.

edit. In 3 more years I can get an upgrade to whatever newer model processor I want, Also Im not losing my disability, matter of fact, everyone I know has been the same. I just got 4 new rechargable batteries ( 2 per processor per year covered) and so much more. So really, get your facts straight.
 
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