This is my third blog on this topic, I know, but I found new information I must share. The articles that I had read about the surgery on Jorja Steele said something about 25 or fewer children worldwide getting this risky auditory brainstem implant surgery. Knowing that the Food and Drug Administration has approved ABIs only for aged 12 and up in the United States, I wondered if any of those 25 or so kids were American.
What did I find tonight but an article from 2006, "Olympian Dreams Deaf Son Hears Cheers" about a deaf three year old boy whose parents took him to Italy so he could have the "delicate, risky" ABI surgery? This means that already, there are desperate parents in the United States choosing to put their deaf children through this extremely risky operation. (Here is a similar article published around the same time)
Maybe over time this surgery will become safer. Maybe it is safer than I think, because I have researched and researched and can not find any examples of anyone, child or adult, dying or having serious complications as a result of an auditory brainstem implant operation. But as long as those serious risks do exist, I don't want to see young deaf children subjected to this operation. Judging from the responses I have gotten to my previous posts on this topic, I can see that the deaf community is indeed concerned. Why aren't more deaf people blogging on this topic? I feel it is something that the deaf community needs to have an open discussion about.
Update: I received this comment in response to my earlier remark that parents should stay out of our deaf children's brains: "As a Father of a deaf child I can understand your concern about this procedure but shouldn't we respect the right of the parents of the child to decide. This is their child, should the fact that they are deaf give unrelated persons rights over the child above those of the parent."
My response: Yes, parents have the right to decide what to do for their children. But at what point does it become a form of child abuse?? If the risks are great enough, is putting a young child unable to decide for themselves, through a potentially life-threatening surgery for a non-life threatening condition, a form of child abuse?? I asked my own mother yesterday what she would do. Her answer was that she would not have risked my life and would have accepted that I was going to have a life as a deaf child. She even said, "I wonder about the values of those parents."
Friday, May 18, 2007
Thursday, May 17, 2007
More on Risks of Auditory Brainstem Implants for Children
I did some more research on auditory brainstem implants tonight. Warning: for the first time, my blog post includes foul language.
First of all, the child that I have been blogging about is only three years old, and from New Zealand. All the research I did indicated that while the Food and Drug Administration in the United States has approved the auditory brainstem implant for use in people aged 12 and up. I also located an article from 2004 about two women in the United States who got auditory brainstem implants.
Next, I wanted to understand better exactly what happens with an auditory brainstem implant. What happens is that the implant is placed in the cochlear nucelus, in the lower part of the brain, called the brainstem. Now what is a brainstem?
According to more research, the brainstem is the lower part of the brain that connects to the spinal cord. The brainstem is VERY IMPORTANT to our lives!!! I can not emphasize this enough. Our very ability to live depends on the brainstem!! The brainstem is responsible for our being able to breathe, eat, our heart rate, our blood pressure, and more. This Wikipedia page on the brain stem has more detailed information, as does this Wikipedia page on the cochlear nucleus.
It is one thing to have invasive brain surgery to save a life. It is another thing entirely to choose that kind of a risk over a life with deafness!! That child's parents knew damn well what risks they were taking. Just read the media articles. But they did not give a ****!! Their main concern was that their child have "every opportunity."
Is this what society has come to? Hearing parents of deaf children so worried about their children missing out on "opportunities" that they will choose to risk their children's very lives in the hope that they can hear?? Haven't those assholes ever heard of modern technology that is enabling deaf children today to be on an equal playing field with hearing children?? Today we have captioning, relay services, instant messaging, and more!
Lest anyone think I am ranting unnecessarily about a child from a foreign country, remember that when cochlear implants began, they were not approved for young babies in the United States. Now they are!!
It galls me that the media reporting on this little girl's surgery is so focused on getting a positive outcome for her. So damned focused on the potential for a "miracle," for breaking through her silent world. So little attention paid to the risks, portraying the parents as heroes for making such a brave decision. Why the hell isn't anyone CONDEMNING those parents for the choice they made?? They KNEW the risks. What's so terrible about a silent world?? We deaf and hard of hearing people live with it every day, and if we had a choice, we would choose silence over death!
Am I overreacting here?? Cochlear implants are very acceptable to me in comparison. I'll take the risk of facial paralysis over the risk of losing the ability to breathe anytime! I'm fine with little babies getting cochlear implants but I do not want to see little babies getting auditory brainstem implants!
I want to scream and shout at the hearing surgeons out there, "stay the hell out of our deaf children's brains unless it is necessary to save their lives!!!" And I want to scream at the hearing "normal-obsessed" parents, "is this what you want?? for your child to grow up and say 'thanks for giving me the ability to hear mom and dad, but why the **** did you have to risk my life to do it??' "
First of all, the child that I have been blogging about is only three years old, and from New Zealand. All the research I did indicated that while the Food and Drug Administration in the United States has approved the auditory brainstem implant for use in people aged 12 and up. I also located an article from 2004 about two women in the United States who got auditory brainstem implants.
Next, I wanted to understand better exactly what happens with an auditory brainstem implant. What happens is that the implant is placed in the cochlear nucelus, in the lower part of the brain, called the brainstem. Now what is a brainstem?
According to more research, the brainstem is the lower part of the brain that connects to the spinal cord. The brainstem is VERY IMPORTANT to our lives!!! I can not emphasize this enough. Our very ability to live depends on the brainstem!! The brainstem is responsible for our being able to breathe, eat, our heart rate, our blood pressure, and more. This Wikipedia page on the brain stem has more detailed information, as does this Wikipedia page on the cochlear nucleus.
It is one thing to have invasive brain surgery to save a life. It is another thing entirely to choose that kind of a risk over a life with deafness!! That child's parents knew damn well what risks they were taking. Just read the media articles. But they did not give a ****!! Their main concern was that their child have "every opportunity."
Is this what society has come to? Hearing parents of deaf children so worried about their children missing out on "opportunities" that they will choose to risk their children's very lives in the hope that they can hear?? Haven't those assholes ever heard of modern technology that is enabling deaf children today to be on an equal playing field with hearing children?? Today we have captioning, relay services, instant messaging, and more!
Lest anyone think I am ranting unnecessarily about a child from a foreign country, remember that when cochlear implants began, they were not approved for young babies in the United States. Now they are!!
It galls me that the media reporting on this little girl's surgery is so focused on getting a positive outcome for her. So damned focused on the potential for a "miracle," for breaking through her silent world. So little attention paid to the risks, portraying the parents as heroes for making such a brave decision. Why the hell isn't anyone CONDEMNING those parents for the choice they made?? They KNEW the risks. What's so terrible about a silent world?? We deaf and hard of hearing people live with it every day, and if we had a choice, we would choose silence over death!
Am I overreacting here?? Cochlear implants are very acceptable to me in comparison. I'll take the risk of facial paralysis over the risk of losing the ability to breathe anytime! I'm fine with little babies getting cochlear implants but I do not want to see little babies getting auditory brainstem implants!
I want to scream and shout at the hearing surgeons out there, "stay the hell out of our deaf children's brains unless it is necessary to save their lives!!!" And I want to scream at the hearing "normal-obsessed" parents, "is this what you want?? for your child to grow up and say 'thanks for giving me the ability to hear mom and dad, but why the **** did you have to risk my life to do it??' "
Wednesday, May 16, 2007
First, Cochlear Implants. Now, Brain Surgery?
I had already posted about this on About.com, but I have stronger feelings about the three year old girl getting an auditory brainstem implant that I must express here instead as they are too strong for About.com.
My concern is that we are starting to cross a line here! Cochlear implants have been largely accepted. Getting a cochlear implant involves placing the implant behind the ear. But according to the news articles about Jorja Steele, THIS surgery involved going DIRECTLY to the brain itself ("The surgery involves placing a prosthetic device directly on the nerve centre at the base of the brain, bypassing the cochlea and the auditory nerve to transmit sound directly to the brainstem.") That in my opinion makes it more risky than a cochlear implant surgery, in which the risks are the normal risks associated with any surgery, temporary or permanent facial paralysis, and impacts to the taste buds.
In comparison to the risks of cochlear implant surgery, what are the risks of the auditory brainstem implant surgery for children? The risk was "neural damage," and a surgeon said "at the brainstem level every neuron you damage could damage function." One of the articles reported that "The three-hour procedure is expected to be a success, but no neurosurgery is without risks and her parents have been briefed on possible complications including stroke, paralysis and bleeding on the brain." Yeow. The risks of cochlear implant surgery sound minimal in comparison!
How far will parents go in their desperation to have their child able to hear?? According to one article, her parents justified the risks by saying that they feared missing out if the technology proves successful: "I don't think we'll ever forgive ourselves if, as a result of surgery, we make matters worse. But we don't want to end up two years down the track and discover that these brainstem implant recipients are doing really, really well and we've missed our chance."
If I had a blind child, how prepared would I be to allow my child to be blind instead of exposing my child to the risks of a brainstem implant? The articles about this surgery report that it has potential to help with blindness and spinal cord stimulation.
This child came out of her surgery okay according to the latest reports. But what happens to the next child? Are the potential benefits of an auditory brainstem implant worth risking a child's life? Are we going to have a wave of parents whose children's cochlear implants fail, rushing to get auditory brainstem implants into their little ones?
I normally would not encourage protest by the deaf community. I remember the early days of cochlear implants. The deaf community, including myself, had strong feelings before we had more information and proof that implants do work, as well as a better understanding of the risks involved. But THIS, I feel, is going too far. I feel that this merits protest by the deaf community, lest a new generation of deaf children be put under the knife for extremely risky surgeries that include the risk of losing their lives.
If anyone does a vlog about this, please put subtitles on it or at least put up a text transcript. Compared to when cochlear implants first started, we now have the internet as a means of educating hearing people about things like this. When you do your vlogs, bear in mind the people you are really trying to reach - the hearing parents of deaf babies today and tomorrow.
My concern is that we are starting to cross a line here! Cochlear implants have been largely accepted. Getting a cochlear implant involves placing the implant behind the ear. But according to the news articles about Jorja Steele, THIS surgery involved going DIRECTLY to the brain itself ("The surgery involves placing a prosthetic device directly on the nerve centre at the base of the brain, bypassing the cochlea and the auditory nerve to transmit sound directly to the brainstem.") That in my opinion makes it more risky than a cochlear implant surgery, in which the risks are the normal risks associated with any surgery, temporary or permanent facial paralysis, and impacts to the taste buds.
In comparison to the risks of cochlear implant surgery, what are the risks of the auditory brainstem implant surgery for children? The risk was "neural damage," and a surgeon said "at the brainstem level every neuron you damage could damage function." One of the articles reported that "The three-hour procedure is expected to be a success, but no neurosurgery is without risks and her parents have been briefed on possible complications including stroke, paralysis and bleeding on the brain." Yeow. The risks of cochlear implant surgery sound minimal in comparison!
How far will parents go in their desperation to have their child able to hear?? According to one article, her parents justified the risks by saying that they feared missing out if the technology proves successful: "I don't think we'll ever forgive ourselves if, as a result of surgery, we make matters worse. But we don't want to end up two years down the track and discover that these brainstem implant recipients are doing really, really well and we've missed our chance."
If I had a blind child, how prepared would I be to allow my child to be blind instead of exposing my child to the risks of a brainstem implant? The articles about this surgery report that it has potential to help with blindness and spinal cord stimulation.
This child came out of her surgery okay according to the latest reports. But what happens to the next child? Are the potential benefits of an auditory brainstem implant worth risking a child's life? Are we going to have a wave of parents whose children's cochlear implants fail, rushing to get auditory brainstem implants into their little ones?
I normally would not encourage protest by the deaf community. I remember the early days of cochlear implants. The deaf community, including myself, had strong feelings before we had more information and proof that implants do work, as well as a better understanding of the risks involved. But THIS, I feel, is going too far. I feel that this merits protest by the deaf community, lest a new generation of deaf children be put under the knife for extremely risky surgeries that include the risk of losing their lives.
If anyone does a vlog about this, please put subtitles on it or at least put up a text transcript. Compared to when cochlear implants first started, we now have the internet as a means of educating hearing people about things like this. When you do your vlogs, bear in mind the people you are really trying to reach - the hearing parents of deaf babies today and tomorrow.
Wednesday, May 09, 2007
Dateline: November 2008
When I read this morning's Washington Post article, "A Sense of Urgency at the Top," my first thought was: Does the Davila-Weiner administration have enough time to accomplish what is literally going to have to be miracles? According to the Post: "By November 2008, the school must achieve compliance with commission standards."
November 2008. With the current academic year ending, that's the equivalent of one and a half academic years from now. Is that enough time to meet standards for Gallaudet to stand on the same level as a hearing college? The pressure on the new administration must be enormous, AND the administration is caught in what seems to be a catch-22. At the same time applications to Gallaudet are falling, the University needs to upgrade the caliber of the students attending Gallaudet.
The deaf community likes Davila and Weiner. So far, Davila seems to be doing everything right. It would be a shame for those two men to get the blame if Gallaudet fails to retain its accreditation. Other bloggers have suggested this, and the idea is beginning to look better and better to me: Gallaudet should go back to being a college. If Gallaudet were a college again, that would buy them enough time to turn things around.
Whichever way Gallaudet goes, I hope the new Gallaudet will be ready by the time my other child graduates high school in 2012.
November 2008. With the current academic year ending, that's the equivalent of one and a half academic years from now. Is that enough time to meet standards for Gallaudet to stand on the same level as a hearing college? The pressure on the new administration must be enormous, AND the administration is caught in what seems to be a catch-22. At the same time applications to Gallaudet are falling, the University needs to upgrade the caliber of the students attending Gallaudet.
The deaf community likes Davila and Weiner. So far, Davila seems to be doing everything right. It would be a shame for those two men to get the blame if Gallaudet fails to retain its accreditation. Other bloggers have suggested this, and the idea is beginning to look better and better to me: Gallaudet should go back to being a college. If Gallaudet were a college again, that would buy them enough time to turn things around.
Whichever way Gallaudet goes, I hope the new Gallaudet will be ready by the time my other child graduates high school in 2012.
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