How to Decide on Cochlear Implant Surgery for Children

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This is interesting and comes from a deaf mother of a deaf daughter. They bot have bilateral CI's.

Source: How to Decide on Cochlear Implant Surgery for Children | HearingExchange - Helping Adults and Parents Deal with Hearing Loss since 2000

How to Decide on Cochlear Implant Surgery for Children

Submitted by Paula Rosenthal on March 1, 2008 – 9:55 amPlease Comment

At some point or another, parents of children with severe or worse hearing loss may be encouraged to have cochlear implant surgery for their child. The suggestion may come from school professionals, medical professionals including doctors or audiologists or speech therapists. They also may receive strong opinions from deaf adults or other parents telling them not to “fix” their child, that if they were born deaf, they are meant to be deaf. Cochlear implants are a very personal decision, one that is not necessarily “right” for every person or family. Having said that, I do think it is something to be carefully considered using a variety of resources.

I am a deaf mother of a deaf daughter who is now 12. We both have bilateral cochlear implants after having worn hearing aids for years. We have been very successful with them and are able to hear and understand speech without lipreading, talk easily on the phone, understand many public address announcements and are able to hear noises from distances (sirens, people calling us, etc.) These are not things that happen magically with cochlear implants. It takes time, perserverence and auditory rehabilitation in order to achieve great results. In a word, cochlear implants are a commitment.

When it comes to children, the younger they are implanted and learn to use their cochlear implants, the better the outcomes are in general. This does not mean that an older child will not benefit. But it does mean that he/she may have to work harder than younger children. Whether the child was able to hear speech with hearing aids prior to cochlear implantation can also determine the ease of adjustment.

While many parents who choose cochlear implants for their kids also use oral communication, getting cochlear implants does not mean that children have to stop signing or not continue to be immersed in Deaf Culture. Those are really separate, individual choices. They will find it easier to learn to speak orally though and should have therapy to help them do so. Getting a cochlear implant (or two) and not giving the child the tools to help them use it effectively, learning to listen and speak, just doesn’t make sense. It is not a “miracle” device that you pop in and suddenly comprehension soars. It takes time and practice and perserverence as I mentioned above.

In order to make any decision about this, I recommend that you research it by gathering facts, not just opinions. All of the FDA approved manufacturers put out marketing materials (dvds, books, etc.) that you can get for free. While they are truthful, remember that they are marketing materials and not everyone achieves the same results. Here are the links to their websites where you can get free info:

MED-EL – The Hearing Implant Company | Cochlear Implants | Middle Ear Implants | Electric Acoustic Stimulation!
BionicEar.com – Harmony Cochlear Implant by Advanced Bionics!
Cochlear: World leader in advanced hearing solutions. Nucleus cochlear implants and the Baha system.!

For those who are concerned about implanting children who use sign language, I recently posted on my blog about stories from Deaf/deaf people who have gotten cochlear implants. You can read it online here: No Cochlear Implant Stories? Think Again!

Consider having your child evaluated for cochlear implants at a reputable cochlear implant center in your state. Most large hospitals have them and you can search the manufacturers’ websites for the contact info. Write down and bring all of your questions to the appointment. Tell them you want to connect with other parents with children of similar ages and hearing histories who have already undergone the procedure. Find out if they have any upcoming events with parents and/or children speaking on panels. If not, give the center your phone number or email address and tell them to have at least two parents contact you.

Join cochlear implant groups online. Read their discussions and ask questions of the people there. You will probably be able to find other parents with similar backgrounds. My favorite cochlear implant support groups online are CICIRCLE with over 1500 parents which can be joined online here and CI Hear, also with over 1500 members which can be found online here.

Please understand, this post is not to convince you to implant your children. As I said, I firmly believe that it is an individual choice for parents. I am offering resources for you to use to make an educated choice.

Feel free to contact me at anytime at info@hearingexchange.com.
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She is closing down her site or at least decided to focus on other things now.
 
Oh, and notice that it's written in a way that implies " CI is the BEST!"
Again, I have NO beef with kids who obviously need one right off the bat.
They should get it with NO problems whatsoever................They are walking a very thin line here....................and I would say this if this was a blog promoting hearing aids and oral schools (and I bet you ANYTHING back in the old days there would have been stuff like that)
CI is awesome...............but with the recent loosening of who can/caqn't get implanted, and the hue and cry over bilateral implants (even thou the benifit with bilateral implants is minimal) there' s just some sketchy marketing stuff going on!
 
Mod note:

Posts are removed.

Now, let's have some respect in this forum regardless of the differences you guys have. To have a debate in a civil manner.

Thank you.
 
Thanks Calvin. Sometimes it seems futile to even discuss CI's with certian people.
 
deafdyke said:
Oh, and notice that it's written in a way that implies " CI is the BEST!"
Again, I have NO beef with kids who obviously need one right off the bat.
They should get it with NO problems whatsoever................They are walking a very thin line here....................and I would say this if this was a blog promoting hearing aids and oral schools (and I bet you ANYTHING back in the old days there would have been stuff like that)
CI is awesome...............but with the recent loosening of who can/caqn't get implanted, and the hue and cry over bilateral implants (even thou the benifit with bilateral implants is minimal) there' s just some sketchy marketing stuff going on!
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Why shouldn"t a CI user get the benefit of hearing with two ears? Hearing people and HA users do!

I have no problem with the candiacy. If the CI is proven to work better for a group, that is when they become candidates. So, why shouldn't they get one?
 
Great post Faire Jour, try telling that to NHS in UK!!!! they think us as adults don't need it.
 
Why shouldn"t a CI user get the benefit of hearing with two ears? Hearing people and HA users do!

I have no problem with the candiadvantacy. If the CI is proven to work better for a group, that is when they become candidates. So, why shouldn't they get one?
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Faire_jour that's easy. The benifit from bilateral implantation is NOT as major as the first one. Baiscily the benifit is " ease of hearing in noisy situtions and sound localization."
Many canidates can get that by using a hearing aid in that ear. Besides, difficulty hearing in noisy situtions and sound locatization are basicly a universal annoyance that virtually ALL hoh folks experiance. I don't think that bilateral implants should never be offered. Just that only people who REALLY literally get NO benifit from aids or who have significent recruitment should get it. But deep profound loss in both ears is pretty rare you know.
I have problems with the canidacy requirements b/c it seems like the CI companies are promoting it as "it overcomes ALL the disadvantages of being hoh"
I've also seen cases of fudging to get the CI " Oh my wittle Smashlie is hoh with hearign aids, but without, she's not. Let's implant her!"
Then again.........it'.s hard to really tell about stuff like that. It happens......and I think there should be a crackdown/tightening up of canidacy requirementsl. That way people who REALLY need it can get it easily.
It is a great thing.........but it does seem like some of the people who are ambigious canidates are almost believing the hype that " Oh it overcomes all the disadvantages of being hoh!" or they need the latest cutting edge hearing instrument (and that is actually a tenant of auditory verbal practice........that people get the latest technology)
 
deafdyke said:
Faire_jour that's easy. The benifit from bilateral implantation is NOT as major as the first one. Baiscily the benifit is " ease of hearing in noisy situtions and sound localization."
Many canidates can get that by using a hearing aid in that ear. Besides, difficulty hearing in noisy situtions and sound locatization are basicly a universal annoyance that virtually ALL hoh folks experiance. I don't think that bilateral implants should never be offered. Just that only people who REALLY literally get NO benifit from aids or who have significent recruitment should get it. But deep profound loss in both ears is pretty rare you know.
I have problems with the canidacy requirements b/c it seems like the CI companies are promoting it as "it overcomes ALL the disadvantages of being hoh"
I've also seen cases of fudging to get the CI " Oh my wittle Smashlie is hoh with hearign aids, but without, she's not. Let's implant her!"
Then again.........it'.s hard to really tell about stuff like that. It happens......and I think there should be a crackdown/tightening up of canidacy requirementsl. That way people who REALLY need it can get it easily.
It is a great thing.........but it does seem like some of the people who are ambigious canidates are almost believing the hype that " Oh it overcomes all the disadvantages of being hoh!" or they need the latest cutting edge hearing instrument (and that is actually a tenant of auditory verbal practice........that people get the latest technology)
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I don't have a problem with any of those things. If it an improvement, why NOT do it?

Bilaterals make a huge difference for the ear you implant. It would improve Miss Kat from 25% up to near 90%, how is that not significant?
 
Why would anyone not go for any improvement even if it's slight. Each person has to weigh the risk/reward/cost factor. I don't think any one person can say what is right or wrong for another. It's an individual choice and for very young children, yes the parent is making that choice for them. There is nothing wrong with that as long as it is an well thought out and educated choice and not just because the doctor or someone else recommended for or against it.
 
faire_jour said:
I don't have a problem with any of those things. If it an improvement, why NOT do it?

Bilaterals make a huge difference for the ear you implant. It would improve Miss Kat from 25% up to near 90%, how is that not significant?
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I just wanted to tell you that I've never been profoundly deaf. I'm severe hard of hearing in the about 80-90 decibel loss in both ears (somewhere in that range) who wore hearing aids since I was 3 or 4 years old or maybe younger as I was diagnosed the same time my older sister was.

I was ok with speech and my hearing is better than most people here on AD (like I said, I am not profoundly deaf) , I just hope you will realize that Ms. Kat will always need visual accommodations. I always did.
 
The main reason why bilaterals are generally considered a "luxury"...

There is a cost associated with everything. Since most CIs are funded via societal efforts (i.e., insurance, gov't funding, private foundations and etc.), it becomes an issue in how best provide maximum "benefits" to the population at large.

It has been shown that one CI provides the best "bang for the buck" and thus such "generosity" focuses on at least providing that option. In cases where it is deemed necessary (i.e., deaf blind and other scenarios), then bilaterals make sense. ***Remember, having one good ear is sufficient for most people to get along as productive members of society.

Now it seems that in some instances (at least here in the US), insurance companies have started to cover bilaterals. Whether that will become a general trend, that remains to be seen. I guess the big question for insurance companies is whether or not this would be a good way to allocate scarce resources (i.e., limited funds). It all comes down to money as always.
 
sr171soars said:
......................... ***Remember, having one good ear is sufficient for most people to get along as productive members of society...............................
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I use to work with a guy that was completely deaf in one ear and he would compensate. I never knew it until one day when he told me.
 
I
don't have a problem with any of those things. If it an improvement, why NOT do it?

Bilaterals make a huge difference for the ear you implant. It would improve Miss Kat from 25% up to near 90%, how is that not significant?
Click to expand...
It's significent yeah...........but is there any evidence that it helps out in a real world context?
I'm not talking about those with deep profound losses, or deaf blind or whatever.
Thing is with hearing assistance, you really can't just have an ear stand alone. The ears work together. So that way you can have someone in bilateral hearing aids with an uneven loss but it works TOGETHER.
Also, it seems to be like getting the latest cell phone even though a bare bones cell would work well for your needs.
I know the way you're thinking............. but as long as you have one functionally hoh ear, you should do awesome. There are a ton of people who have done well with just ONE CI for years!
I have to say I think you're buying into the psychological tricks practiced by the pro-oral folks....... Miss Kat is doing FINE!!! I think you think that maybe if you get the best of the best equiptment, she might do superhigh acheiver. You're doing FINE......seriously....She's getting some input and it all works togehter to create a big picture. You have to remember that a lot of the families of the kids who are bilateral are super high achiever types...... They would probaly do really well even with ONE CI! (or even with a first generation CI!)
I've got to say with the insurance reform that I doubt that bilaterals will be as accepted. There's going to be HUGE crackdowns......b/c the second CI is extremely expensive for relatively minimal benifit. Even Volta Voices says that the benifit from two CIs, are sound localization AND ease of hearing in sound. Virtually ALL hoh folks (including unilateral hoh) experiance that...........Besides, Miss Kat is getting that from just her HA........
 
deafdyke said:
I
It's significent yeah...........but is there any evidence that it helps out in a real world context?
I'm not talking about those with deep profound losses, or deaf blind or whatever.
Thing is with hearing assistance, you really can't just have an ear stand alone. The ears work together. So that way you can have someone in bilateral hearing aids with an uneven loss but it works TOGETHER.
Also, it seems to be like getting the latest cell phone even though a bare bones cell would work well for your needs.
I know the way you're thinking............. but as long as you have one functionally hoh ear, you should do awesome. There are a ton of people who have done well with just ONE CI for years!
I have to say I think you're buying into the psychological tricks practiced by the pro-oral folks....... Miss Kat is doing FINE!!! I think you think that maybe if you get the best of the best equiptment, she might do superhigh acheiver. You're doing FINE......seriously....She's getting some input and it all works togehter to create a big picture. You have to remember that a lot of the families of the kids who are bilateral are super high achiever types...... They would probaly do really well even with ONE CI! (or even with a first generation CI!)
I've got to say with the insurance reform that I doubt that bilaterals will be as accepted. There's going to be HUGE crackdowns......b/c the second CI is extremely expensive for relatively minimal benifit. Even Volta Voices says that the benifit from two CIs, are sound localization AND ease of hearing in sound. Virtually ALL hoh folks (including unilateral hoh) experiance that...........Besides, Miss Kat is getting that from just her HA........
Click to expand...

Why should she have one good ear and one bad ear, if she can have 2 good ears? What on earth is wrong with that? They gave her 2 HA's because bilateral hearing is superior to unilateral, so why would it be different for CI's. All the research, for HA and CI's show that having 2 ears is better.
 
funny, I always end up wearing one hearing aid. I had two, but for some reasons, I had to wear just one. I never knew why either. My sister was the same way. She couldn't stand wearing two hearing aids.
 
That is interesting at #1 post link. That is nothing wrong for deaf parents' decide to implant deaf children. Because they want to make their children life better than parent's life in past experience. The important is educate on research for CI before make decide.
 
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