Why adults choose CI's for their children

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rockdrummer said:
I have been a member here for a month or so now and have learned very much from this and other sites relating to deaf issues. One thing that I have learned is that some in the deaf community feel that if a parent chooses to have a CI for their child, it's because they don't accept their child for who they are. While I can't speak for everyone, I know that for me there is nothing further from the truth. So I would ask the parents of deaf children to please respond with the reason you chose a CI for your child.

Thank you
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I never knew there was so much controversy on this subject. I am learning so much by hanging around here in All Deaf Com. I have a son, he is hearing. After reading these threads (Animal Lover's removal also) I wonder what I would do if my son were born deaf. One thing as a parent, we want to provide all the necessary tools to enable advancement in life. Had I given this choice, I really do not know what I would do at this point. From my own hearing impaired life experience, I wouldn't want my son to have to go through it too. Why? Life is much more fuller hearing sounds. Im not ashamed of being deaf. In fact, I call myself deaf although I speak extremely well, and most wouldn't know it. I did mention before that no deaf school would accept me as a child in fear that it would set me behind. I hated it and it meant life is twice as hard. I really would have to think good and though about implanting my own child. I applause the parent who love and give all they got to help their children. Suzi
 
The CI is new technology, thats the bottom line. It will work for some people but unfortunately not for all. I, myself have yet to meet a parent that was not informed about the fact that there is a chance it could fail. Just like every other surgery, there's no guarantee. Money is always sunk into new technology, thats just the way the world works. What the CI has done for my daughter is priceless in my opionion. Don't you think relay and other types of services for the dhh cost money? Not all doctors are butchers and only in it to make a profit, believe or not , there are some out there who actually do care for their patients.
 
What is your definition of "new" technology?
 
rockdrummer said:
Not necessarily. The manufacturers are profit driven. That's not to say they are not concerned about advancing the technology but you have to admit, given how they measure success, they are painting an inaccurate picture. If a person gets a CI and the CI itself is functioning but the person gets no benefit, that is considered success. Please don't say that you agree with that method of measurement. Especially when success rates are a major driving factor in ones decision. As I understand it, its the FDA (in the US) that allows this as well. Personally, I think it’s a crock and it smacks of profitisim.
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This whole world is profit driven. That is part of staying in business.
Have a look at all the advertisement here on AllDeaf...... isn't this profit-driven?

The statement that I described as a "load of crap" falls in the same category as "Relay services are all about making money" - "Sign translaters are just to make money" and to use the example of ismi - "Heart-surgeons are all money-driven".

Your son was unfortunate with CI. That was not his fault. Other people grately benefitted from CI, and many never profited from it.
Of the category that profited from it, I have never heared that they did not have to work for it. On the other side, from many of the people that have not benefitted from it, I got the impression that they just wanted to try it.... and they didn't like it...

Now, "just trying it, and not liking it"... e.g. "there's SOO much noise in the world.."
Should this be considered a failure on the part of the CI-munufacturers.... NO
This is lack of commitment from the side of the CI-user..!!!

And then there are many cases in between.

The manufacturers provide working systems...
......... it's up to the user to try the hardest to make it work.... !!
 
ismi said:
If a patient has heart bypass surgery, but then can't lower their cholesterol (due to behavior, poor genetics, whatever), does that make the surgery a 'failure'? There are a lot of definitions for failure, and not all of them are controlled by the company. For most medical procedures, there is a "failure rate" that is different than the "optimal outcome" or "satisfactory outcome" rate. With CIs, where "satisfactory outcome" is so subjective, these measurements become fuzzy.
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The only way to actually measure something like that would be with a self report survey using a Likert Scale. But it would be extremely difficult, because it is so objective, and variables going into the surgery fall on an infinate number of points along the continuum.
 
Cloggy said:
This whole world is profit driven. That is part of staying in business.
Have a look at all the advertisement here on AllDeaf...... isn't this profit-driven?

The statement that I described as a "load of crap" falls in the same category as "Relay services are all about making money" - "Sign translaters are just to make money" and to use the example of ismi - "Heart-surgeons are all money-driven".

Your son was unfortunate with CI. That was not his fault. Other people grately benefitted from CI, and many never profited from it.
Of the category that profited from it, I have never heared that they did not have to work for it. On the other side, from many of the people that have not benefitted from it, I got the impression that they just wanted to try it.... and they didn't like it...

Now, "just trying it, and not liking it"... e.g. "there's SOO much noise in the world.."
Should this be considered a failure on the part of the CI-munufacturers.... NO
This is lack of commitment from the side of the CI-user..!!!

And then there are many cases in between.

The manufacturers provide working systems...
......... it's up to the user to try the hardest to make it work.... !!
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So, you think that manufacturers would continue to produce CI and just give the equipment to the surgeons to implant if they weren't gettin paid? The manufacturers sell to the surgeons, the surgeons sell to the patient in order to recoup the money they spent with the manufacturer. You are extremely naive if you believe that there is any altruism in this process.
 
kayla123 said:
The CI is new technology, thats the bottom line. It will work for some people but unfortunately not for all. I, myself have yet to meet a parent that was not informed about the fact that there is a chance it could fail. Just like every other surgery, there's no guarantee. Money is always sunk into new technology, thats just the way the world works. What the CI has done for my daughter is priceless in my opionion. Don't you think relay and other types of services for the dhh cost money? Not all doctors are butchers and only in it to make a profit, believe or not , there are some out there who actually do care for their patients.
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Understood but it's the failures that need to be quantified. As a parent faced with this decision I would lean one way or another depending on the numbers. Example; If there was a 50% device failure rate I would opt to not go through with the surgury. If there was a 1% device failure rate and an 30% soft failure rate I would opt to not go through with it. My only point is that the information needs to be available so that parents can make an informed decision. Soft failures are not reported which means that the information provided is not complete or accurate. How can a parent make an informed decision without all of the facts? They can't. I put together a better response from home and have provided links to some valuable information. For some reason I could not post to this thread last night. I will try again when I get home this evening
 
sr171soars said:
While we are on the subject of CI companies and their motivations...

There are no simple answers to a complex and complicated technology that provides tremendous benefits to people without hearing. This is especially true if the "older" more simple technology (HAs) doesn't do the trick anymore. The sound bites just don't do justice to this issue...

Jillio - What a trite answer that has no data backing such a stance. The original intent was laudable and noble in what it accomplishes. They don't make the kind of money that MS is well known for. Just because it is a company and have some profit motive, it doesn't mean it is worthless. Until there is a better way for driving businesses and keep them going...the profit motive is the best way to measure success. Remember there are degrees of success...or better put we are not dealing with Enron here... At least in this case of the CI companies, many people have benefited from their products and there aren't millionares left and right in the companies.

Rockdrummer - Let's ask this in a different way. If there is a heart procedure that saves thousands of lives a year but fails a couple of people maybe more, do we call that a failure or just the way the dice is rolled? Not everybody benefits from the promises of technology. Perhaps there needs a better way to measure success but the fact remains nobody knows exactly why most people tend to benefit and some don't. There are reasons that go beyond the CI itself and of no fault of the company. So from that standpoint, that makes it very difficult to pinpoint what makes a success or not. One more thing, there is managing expectations and that skews the results as well. We all have heard the second hand hype what a CI can do. Of course, most of us know better as well but the world out there doesn't know that.
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Yes there are degrees of success--that is the whole point. The varying degrees are not reported. What is reported is sucess/no success. The issue contains many, many more varialbe, and what one judges as a success, another does not. Manufactures base their success rates on a functioning system, not on the subjective advantage ot the individual. It is the difference between the ideal and the actual. Consumers need access to all of the information, not just that which favors the side of the manufacturer.
 
jillio said:
Yes there are degrees of success--that is the whole point. The varying degrees are not reported. What is reported is sucess/no success. The issue contains many, many more varialbe, and what one judges as a success, another does not. Manufactures base their success rates on a functioning system, not on the subjective advantage ot the individual. It is the difference between the ideal and the actual. Consumers need access to all of the information, not just that which favors the side of the manufacturer.
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This is exactly my point. Nobody is here to bash the CI or the Doctors or the OEM's. As you mention, they each measure success in a different way. The surgeon measures succes by a full proper insertion. The OEM measures success by the processor being able to communicate with the reciever. Lets not loose sight of the indications of the CI. For the end user success is measured by their ability to connect with the sounds in their world. By their ability to recognize and perhaps use speech. For some children the learning pace will increase along with their aquisition of language. I am not saying that overall people are not benefiting for the CI. I am sure that they are. This thread is about individual choices and what works for an individual. Remember that the FDA has approved CI's for children as young as 12 months old. That is just a baby and the decision to put such a small infant through this should not be taken lightly. Every shred of information should be made available to the parent faced with the decision. Including hard and soft failure rates. The reasons for the failures including lack of participation by the patient. As an adult I may take a chance if the failure rate was 50% but I sure as hell would not do that for my 12 month old child. It's not a debate about how much failure there is and why, it's about documenting and providing that information to those faced with this decision. It's not an argument about the benefits of the CI overall, its about providing accurate and complete information so that parents (or anyone considering a CI) can make an informed decision.
 
Cloggy said:
This whole world is profit driven. That is part of staying in business.
Have a look at all the advertisement here on AllDeaf...... isn't this profit-driven?
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Yes I get that and it's why I am such a cynical bastard. I don't think that when it comes to the well being of a humans, profits should be the motivation. I don't care what anyone says there are many cases where it is. Not all doctors are bad but not all of them are good either. It's a crap shoot and that is the reality not matter what you believe. My only point is to provide complete and accurate information so that folks can make informed decisions. I don't think thats an unreasonable request.

Part of what makes me believe they are misrepresenting to their favor are the OEM numbers that only say the hardware failure rate is 1%. What they don't tell you is that when it comes to children the hardware failure rate is 8%. Why do you think they skew the numbers? I'll tell you why. They know that those numbers directly impact a parents decision and a higher failure rate may cause parents to not go with a CI. I am open to any other logical explanation as to why they would not report the actual 8% hard failure rates in children. At the end of the day the only metrics you have to go by are from the OEM's and surgeons which only report if the hardware is functioning and the surgury was successful. That doesn't speak to the end users benefit which in my opinion is a huge determining factor in the decision process. Let me give you an example and tell me if it makes sense to you. From my line of thinking I would like to see the data reported in the following manner. All of which I believe is accessable from the OEM's, The FDA (in the US), the medical community which includes the surgeons and audiologists. For the sake of illustration I will focus on the US statistics.

This is just an example to illustrate a point. These numbers are ficticious;

Total number of implants = 25,000
Total adults implanted = 15,000
Total children (under 18) implanted = 10,000
Over all failure rate = 19% broken down as follows;
Total percent of hardware failures = 4%
Total percent of surgicle failures = 6%
Total percent of soft failures = 9%

And then even break down the soft failures to include those that don't benefit due to lack of involvement or desire so as not to mis-represent. Breaking down soft failures could also benefit the person faced with the decision. For my son ossification was the culprit. If soft failures were broken down into catagories there may emerge a trend that illustrates most with ossification will fail to get any benefits. Do you think having that information would have affected my decsiion. Your damn right it would have and I would have chosen not to go with the CI.
 
:gpost:
rockdrummer said:
Yes I get that and it's why I am such a cynical bastard. I don't think that when it comes to the well being of a humans, profits should be the motivation. I don't care what anyone says there are many cases where it is. Not all doctors are bad but not all of them are good either. It's a crap shoot and that is the reality not matter what you believe. My only point is to provide complete and accurate information so that folks can make informed decisions. I don't think thats an unreasonable request.

Part of what makes me believe they are misrepresenting to their favor are the OEM numbers that only say the hardware failure rate is 1%. What they don't tell you is that when it comes to children the hardware failure rate is 8%. Why do you think they skew the numbers? I'll tell you why. They know that those numbers directly impact a parents decision and a higher failure rate may cause parents to not go with a CI. I am open to any other logical explanation as to why they would not report the actual 8% hard failure rates in children. At the end of the day the only metrics you have to go by are from the OEM's and surgeons which only report if the hardware is functioning and the surgury was successful. That doesn't speak to the end users benefit which in my opinion is a huge determining factor in the decision process. Let me give you an example and tell me if it makes sense to you. From my line of thinking I would like to see the data reported in the following manner. All of which I believe is accessable from the OEM's, The FDA (in the US), the medical community which includes the surgeons and audiologists. For the sake of illustration I will focus on the US statistics.

This is just an example to illustrate a point. These numbers are ficticious;

Total number of implants = 25,000
Total adults implanted = 15,000
Total children (under 18) implanted = 10,000
Over all failure rate = 19% broken down as follows;
Total percent of hardware failures = 4%
Total percent of surgicle failures = 6%
Total percent of soft failures = 9%

And then even break down the soft failures to include those that don't benefit due to lack of involvement or desire so as not to mis-represent. Breaking down soft failures could also benefit the person faced with the decision. For my son ossification was the culprit. If soft failures were broken down into catagories there may emerge a trend that illustrates most with ossification will fail to get any benefits. Do you think having that information would have affected my decsiion. Your damn right it would have and I would have chosen not to go with the CI.
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+1 to this!
 
rick48 said:
What is your source for that statement and BTW how do you determine whether a person derives a "benefit" or not from a ci?
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Most of that statement are my own words based on what I have learned. Regarding what is considered success/benefit, remember the objective of the CI is to restore hearing or a portion of it and provide the ability to recognize and use speech and to connect with the sounds of one’s surroundings. It's easy to tell when one benefits. They will have measurable hearing or the amount of hearing will increase and they will be able to distinguish sounds. They may also be able to recognize and use speech and the learning pace of children may also increase. I don’t believe that if one benefits, it won’t be noticeable or measurable. Do you?

As far as being profit driven, I will admit I am a bit of a cynic. I'm sure there are other motivations or perhaps the manufacturers are adhering to FDA standards and have no say in the matter. To my knowledge there are only a couple of FDA approved OEM’s in the US. Also don't forget, everyone has an agenda and some are hidden. Its like when you are asked for references at a job interview. Are you gonna give any that you know are bad? If you are like most, you probably won’t.

Interestingly enough, there are still many sources that report a 1% device failure rate but don't mention that when it comes to children, the rate is much higher (9%). This number only reflects hard failures and doesn’t address the soft failures..

For me as a parent faced with the decision, success is not subjective. The ability to hear and at what level will be measurable. The ability to understand and use speech will also be measurable. The failure rate would be a major driver in my decision. The fact that soft failures are not factored in is a major concern of mine and should be of anyone faced with this decision.

I read your point and the other comments comparing heart surgery and here is my response.
What I am griping about is that the information provided is not accurate or perhaps not complete depending on your perspective.. If the processor can talk to the receiver the OEM considers it a success. If the receiver is implanted completely the surgeons consider it a success. What if the device is functioning and properly inserted but the person gains no measurable hearing, no ability to recognize or use speech and has no other benefit in terms of connecting to the sounds of their world? Do you consider that a success? When we consider the overall objective of the CI then we can't possibly consider it a success if the patient gains no benefit in terms of the indications and the objective of a CI. Its what I would consider a soft failure and it should be reported so that parents faced with the decision can factor that in and make an informed one. Personally I think it’s reasonable to expect access to that data and can't think of any legitimate reason to not provide it. Can you?
 
Here is some interesting information.

Unfortunately, like most mechanical devices, these implants occasionally cease to function. The rate at which the cochlear implant fails, however, does not appear to be the same in adults and children. The failure rate for children far exceeds that observed in adults. The overall failure rate reported by Cochlear Corporation notes that whereas only 3% of the adults have had this type of problem, 9% of the children have had failed internal receivers
SOURCE CAT.INIST
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neecy said:
What is your definition of "new" technology?
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I don't get the purpose of your question. I think we both know that the CI is the latest technology for people with severe to profound deafness. It sounds like you are trying to be sarcastic and i can't see why.
 
rockdrummer said:
I read your point and the other comments comparing heart surgery and here is my response.
What I am griping about is that the information provided is not accurate or perhaps not complete depending on your perspective.. If the processor can talk to the receiver the OEM considers it a success. If the receiver is implanted completely the surgeons consider it a success. What if the device is functioning and properly inserted but the person gains no measurable hearing, no ability to recognize or use speech and has no other benefit in terms of connecting to the sounds of their world? Do you consider that a success? When we consider the overall objective of the CI then we can't possibly consider it a success if the patient gains no benefit in terms of the indications and the objective of a CI. Its what I would consider a soft failure and it should be reported so that parents faced with the decision can factor that in and make an informed one. Personally I think it’s reasonable to expect access to that data and can't think of any legitimate reason to not provide it. Can you?
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Now, I see where you are coming from. I say that is a perfectly reasonable request and companies should provide it. At least, nobody can blame the company and complain "I didn't know..." after getting a CI.
 
jillio,

"Just because I disagree with you an some of your more innane points does not mean that I am anti-CI."

Actually, the word is "inane" and means lacking sense or substance.

Since I have mostly related personal experiences involving my daughter and the fact she has a ci (I guess that is the "information sharing" part of your diatribe) or that parents have the right to choose a ci for their children, please cite an example of one of my points lacking sense or substance.
 
jillio said:
Yes there are degrees of success--that is the whole point. The varying degrees are not reported. What is reported is sucess/no success. The issue contains many, many more varialbe, and what one judges as a success, another does not. Manufactures base their success rates on a functioning system, not on the subjective advantage ot the individual. It is the difference between the ideal and the actual. Consumers need access to all of the information, not just that which favors the side of the manufacturer.
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Exactly my point! Don't just feed me partial information. To make such a profound decision I need access to all of the information. And break it down as much as possible. How does one go about invoking change in this area? I would not even know where to begin. But until it happens a warning to parents faced with the decision. Just know that as of this posting, the failure rates reported are skewed in terms of children and also that soft failure rates are not reported. OEM's report 1% device failure but for children it's really 9%. I will provide up to date stats as I find them. Another problem is that this information is not that easy to find. Especially up to date info. If anyone else has a source please post it here. Thanks!
 
It seems like many parents here of children with CIs, except for Rockdrummer, are very defensive if there is anything negative stated about CIs?? CIs are not perfect and I get the feeling that many people here cant seem to accept that? If I am wrong, let me know but that is what I am percieving here.
 
shel90 said:
It seems like many parents here of children with CIs, except for Rockdrummer, are very defensive if there is anything negative stated about CIs?? CIs are not perfect and I get the feeling that many people here cant seem to accept that? If I am wrong, let me know but that is what I am percieving here.
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For the record I am not anti CI. I think that its an amazing piece of technology that does help many people. I also know based on my experience that its not an easy decision especially when it comes to implanting an infant or young child. I just think that for any parent to make an informed decision they need full access to the facts with regard to every aspect of success and failures. Otherwise you are not really making an informed decision.
 
i enjoy this site alot it gives so much info. but when it comes to implanting children I am all for it. My son had his first implant at 16 months, he was born a hearing child and lost most of it due to eva.My husband and I prayed hard about this and we wanted to give our son the best opprutunity out there. we have 2 hearing children. Verbal is our first approach butr we are picking up on some asl. He will be going bilateral here real soon. I can't forget he's deaf, everytime he is in the bath, bedtime, swimming,it reminds us that he is still deaf.and that will always be apart of his life no matter what technology there is ..Any parent out there wants the best for there children.It's not a cure just a precious gift.
 
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