A deaf girl aged 7 dies by cochlear implant.

jillio said:
How about a general physician? All people in the medical community are not biased. However, all those who are on an implant team are naturally biased.
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would a generalist really have the in-depth knowledge needed to aid in such a decision? Maybe... Maybe not. How much time does one take to seek out the informaton? I have heard that in the cases of young children there is a window for language aquisition and there are also cases where time is of the essence. My child was a case in point. Due to ossification setting in the window was rapidly closing. In my view a parent shouldn't have to spend days, weeks and months researching information because in many cases they don't have the luxury of taking that much time.
 
rockdrummer said:
While I am not dis-agreeing with you I would wonder where one can find an unbiased opinion regarding a CI. Everything I have seen is either from the medical community, the OEM's or from anti CI activists of which all are bias.
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i think this is generalising a little. There are posters here that tend to be neutral on this topic such as Shel and Deafdyke. I consider myself more anti CI. Not that I've anything against deaf CHOOSING to get a CI for themselves but the choice has to be theirs and I resent when certain deaf and deafblind charities focus exclusively on the CI's and not on alternatives. It makes me feel like CI's are being rammed down my throat. If only they would promote ALL tecnology advances in eqal messure (not just things that can be seen as a 'cure')and were a little less biased then they are I would be less anti CI I think.
 
rockdrummer said:
would a generalist really have the in-depth knowledge needed to aid in such a decision? Maybe... Maybe not. How much time does one take to seek out the informaton? I have heard that in the cases of young children there is a window for language aquisition and there are also cases where time is of the essence. My child was a case in point. Due to ossification setting in the window was rapidly closing. In my view a parent shouldn't have to spend days, weeks and months researching information because in many cases they don't have the luxury of taking that much time.
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Was the window closing because of late diagnosis? And agreed, parents shouldn't HAVE to go to these lengths, but the fact is, they HAVE to. And in my opinion, are obligated to for the sake of their child's welfare.
 
jillio said:
How about a general physician? All people in the medical community are not biased. However, all those who are on an implant team are naturally biased.
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I think perception of bias can depend somewhat on your own point of view. I have friends who are passionately anti vaccination and they believe that GPs are biased, not educated enough about the dangers of vaccinations, are being paid by drug companies to get as many people vaccinated as possible and so on.

I don't agree with them of course but that's their point of view. They believe they are doing the best by their children by not having them vaccinated, until they are old enough to make their own choice.
 
R2D2 said:
I think perception of bias can depend somewhat on your own point of view. I have friends who are passionately anti vaccination and they believe that GPs are biased, not educated enough about the dangers of vaccinations, are being paid by drug companies to get as many people vaccinated as possible and so on.

I don't agree with them of course but that's their point of view. They believe they are doing the best by their children by not having them vaccinated, until they are old enough to make their own choice.
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I think that borders on irresponsibility on the parents' part.

My father has always wished that the Rubella vaccine was available when I was born. I don't think he has ever gotten over the fact I was born deaf. I think my loss was more devasting to him than it is to me. I've never felt devasted by my loss. .
 
R2D2 said:
I think perception of bias can depend somewhat on your own point of view. I have friends who are passionately anti vaccination and they believe that GPs are biased, not educated enough about the dangers of vaccinations, are being paid by drug companies to get as many people vaccinated as possible and so on.

I don't agree with them of course but that's their point of view. They believe they are doing the best by their children by not having them vaccinated, until they are old enough to make their own choice.
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And I can understand their point of view, as physicians receive "gifts" from drug companies on aregular basis, jsut as CI implant teams receive such from CI manufacturerers.
 
jillio said:
And I can understand their point of view, as physicians receive "gifts" from drug companies on aregular basis, jsut as CI implant teams receive such from CI manufacturerers.
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Well I don't know if CI manufacturers send gifts to implant teams, but it does seem to be a fairly widespread practice generally across the medical community. I would tend to agree with you that it's not a good practice, as potentially and theoretically it could induce medical personnel not to act in the patient's best interest.

Anyway, I did my own research about vaccinations and went ahead and did them. Despite the problems inherent in the medical industry, the benefit outweighed the risks as far as I was concerned.
 
deafskeptic said:
I think that borders on irresponsibility on the parents' part.

My father has always wished that the Rubella vaccine was available when I was born. I don't think he has ever gotten over the fact I was born deaf. I think my loss was more devasting to him than it is to me. I've never felt devasted by my loss. .
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Same here. Maybe it's because he's a doctor?

My mother never expressed such feelings to me. She sees deafness as being part of her family and wouldn't have it any other way.
 
R2D2 said:
Well I don't know if CI manufacturers send gifts to implant teams, but it does seem to be a fairly widespread practice generally across the medical community. I would tend to agree with you that it's not a good practice, as potentially and theoretically it could induce medical personnel not to act in the patient's best interest.

Anyway, I did my own research about vaccinations and went ahead and did them. Despite the problems inherent in the medical industry, the benefit outweighed the risks as far as I was concerned.
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And I would agree with you on the vaccinations. I had my own son vaccinated, because after I had all of the information, I made the informed decision that the benefits outweighed the risks, just as you did. But we both had all of the information necesssary to make an informed decision, and accepted those risks. I just think this case is a perfect illustration of a parent making a decison without all of the information being made available, and when that is the case, they have actually been prevented from making an informed decision.
 
deafskeptic said:
I think that borders on irresponsibility on the parents' part.

My father has always wished that the Rubella vaccine was available when I was born. I don't think he has ever gotten over the fact I was born deaf. I think my loss was more devasting to him than it is to me. I've never felt devasted by my loss. .
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I can understand his feelings. My son was born deaf becasue I was exposed to a virus called CMV when I was pregnant. It is the leading cause of virally caused congenital deafness in children, just as Rubella was prior to the vaccine. And even though a parent understands that they did nothing negligent to cause the exposure, there is always a bit of guilt that remains with you knowing that, even unintentionally and completely by accident, you exposed your unborn child to something that resulted in his or her deafness.
 
R2D2 said:
Same here. Maybe it's because he's a doctor?

My mother never expressed such feelings to me. She sees deafness as being part of her family and wouldn't have it any other way.
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Quite possible. Once he asked me if I blamed him for my deafness. I was floored and shocked that he'd ask me such a question. It had never occurred to me that anyone would be to blame. It's just one of those things that happens.

I wish he'd be a bit more flexiable about my commincation difficultes and that he need to focus on what I can do and not what I can't do.
 
deafskeptic said:
Quite possible. Once he asked me if I blamed him for my deafness. I was floored and shocked that he'd ask me such a question. It had never occurred to me that anyone would be to blame. It's just one of those things that happens.

I wish he'd be a bit more flexiable about my commincation difficultes and that he need to focus on what I can do and not what I can't do.
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It must be quite common for parents to self blame. My husband has very mild epilepsy and I remember his mum saying that she had racked her head to remember if she did something wrong or if he got a bump to his head to trigger it all off.

As you say, it's one of those things that happens. Part of the tapestry of life, I suppose.
 
R2D2 said:
It must be quite common for parents to self blame. My husband has very mild epilepsy and I remember his mum saying that she had racked her head to remember if she did something wrong or if he got a bump to his head to trigger it all off.

As you say, it's one of those things that happens. Part of the tapestry of life, I suppose.
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Absolutley. And sometimes it is much more productive tostop asking "why" and just deal with "what is" because answering the why doesn't change what is.
 
jillio said:
Was the window closing because of late diagnosis? And agreed, parents shouldn't HAVE to go to these lengths, but the fact is, they HAVE to. And in my opinion, are obligated to for the sake of their child's welfare.
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..
Originally Posted by rockdrummer
would a generalist really have the in-depth knowledge needed to aid in such a decision? Maybe... Maybe not. How much time does one take to seek out the informaton? I have heard that in the cases of young children there is a window for language aquisition and there are also cases where time is of the essence. My child was a case in point. Due to ossification setting in the window was rapidly closing. In my view a parent shouldn't have to spend days, weeks and months researching information because in many cases they don't have the luxury of taking that much time.
Click to expand...
 
I think he's saying that because of the ossification, the worse it got the less likely the CI would help his son. Once most of the cochlear becomes ossified, the implant can become useless. This is assuming the operation takes place after ossification - not before the ossification. If I recall correctly, once the cochlea becomes ossified, it can be very difficult to operate on; this depends on the degree of ossification.


Still there are tales of success but I assume that those CIs' cochlears weren't as serverely ossified as RD's son.
 
deafskeptic said:
I think he's saying that because of the ossification, the worse it got the less likely the CI would help his son. Once most of the cochlear becomes ossified, the implant can become useless. This is assuming the operation takes place after ossification - not before the ossification. If I recall correctly, once the cochlea becomes ossified, it can be very difficult to operate on; this depends on the degree of ossification.


Still there are tales of success but I assume that those CIs' cochlears weren't as serverely ossified as RD's son.
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Thanks for clarifying. I thought he was referring to the window of opportunity for oral language development. That's where I got confused.
 
jillio said:
So what are you saying? That it was progressive? My point was that the widow began the moment he was born. What happened to the time between birth and implant?
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He was born hearing. He contracted menengitis when he was 18 months old and lost his hearing as a result.
 
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