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.
Wednesday, May 16, 2007
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13 comments:
The fight against deafness has taken an omnious turn. I am aghast that the surgeons are performing a risky surgery for a non-life threatening condition.
I know. Sad to say, this child for some reason does not qualify for Cochlear Implant. One possibilty that comes to mind, cohlea didnt develop fully or properly. Know of a friend who was a preemie, said because of her birht before full term. Cohlea did not develop properly, or something to the effect.
I felt similarly appalled as you did. It boggles the mind how far parents would go in not accepting their child's deafness and seeing that she is still a normal child.
Parents who are so desperate to have a child that fits their own image of "normalcy" so that they are willing to risk crippling that child or causing her death should be examined by mental health professionals before pushing for such surgery.
Here an element is missing: the knowledge that deaf adults are living satisfactory, happy and productive lives around them and who would advise against the surgery in no uncertain terms.
Protest is not indicated here...intercession is. These parents are alone, barraged by conflicting opinions and eager professionals. They need the help of understanding deaf adults.
ALARMING! I'm sooooooo saddened. It is sickening......and I'm speechless.
Elizabeth,
You got that right. It is one thing when people have surgery that risks their lives in order to save their lives. That's NECESSARY surgery. We are talking about OPTIONAL surgery here that is risking a child's life or quality of life.
Is this child going to grow up and say to her parents, "thanks mom and dad, for giving me the ability to hear...but did you have to risk my life to do it??"
When does this end? It seems like it's a complete rebellion by the Normal society to go after the disabled community. Now hearing this? One has to step back and think: "What happens one day when my child finally grows ups, finally learns what what done to him/her and finally understand that he/she was never always that way and was fixed from Deafness to Robotic hearing, will he/she turn on me in full fury that I messed with God's blessing of Deafness? I hope that the day he/she is mature, I hope I am dead before then.". This is where we have a coming generation of deaf kids just starting to cope with their CIs and realize they are deaf and arguement starting over that with their parents. This one could make things A WHOLE LOT WORSE.
I don't know if I'm more disgusted at the parents or the doctors that think it is okay to do this.
Because of a head injury, part of my brain presses into my optic nerve. It effects my peripheral vision and causes headaches. A neurosurgeon told me they could operate to try and correct it, but that you don't ever want to let someone go poking at your brain with sharp objects unless it was a matter of life or death. In other words, the risk of the surgery far outweighed the benefits!!!!
To me, that these doctors are willing to do this surgery at all is nothing short of medical malpractice.
milk: the child in the article has already had bilateral CI, but they "didn't work." I'm simply aghast at this -- I can't see that this is medically ethical, I can't see that the family is justified in doing this, and I could just go on and on.
"Doing whatever you can" for your child does not include risking his or her life to "avoid" something NOT in itself anything approaching a terminal condition!
One more thing to consider: besides the risk to the child's life and healthy function, how much hearing does brainstem implants "restore"? Is it completely without side effects? There are reports of the implant pulling out of position and infection gaining entrance to the brain through the opening.
If this gives a limited form of hearing similar to that given by the cochlear implant, is it worth the grave risk to the child?
Hard of hearing people are often in a "marginal" world where they are not fully living as hearing people, yet are not quite one of the Deaf community; and worse, were taught to despise Deaf society. To me, these are among the saddest people on earth.
I wonder about these parents who would risk having a dead or severely disabled child over a deaf child.
Undergoing brain surgery is not an easy thing under ANY circumstances, let alone these...
many doctors have the philosohpy of "fix, fix, fix!" they use a certain criteria of what is "normal" and attempt to fix it. Being in the field of special education, I have a different view of "normal". Yes, I agree that CI helps tremendously (and for some people its great) but it still doesn't make you "normal", there's nothing "normal" about having a chip planted in your head. It restores hearing but not "normal" hearing. So having CI goes against the doctors philosophy of "fixing" what is not "normal".
The bottom line is we need to find a better way to educate and inform parents and doctors that there is a Deaf community. Their Deaf child doesn't need to be "fixed". The average hearing person does not know anything about Deaf Culture, I know first hand because I didn't know anything until I took ASL I.
So as a result, parents take advice from a doctor who thinks everyone should be "normal" and the ones who are not "normal" should be "fixed"
We need to educate!
...so whats next after the brain surgery?
It is always easy to criticise people who firmly believe in what they are doing, if their ideas differ from your own.
We applaud these parents for making this differcult decision in order to give what they consider to be a better chance in life for their daughter.Do you think the decision was easy to make, they thought about it long and hard,
and would never have gone ahead if they did not 100% beleive Jorja would be ok.
We are often to quick to judge without knowing all the facts.
I do not beleive it was a fight against deafness,It is a fight to give this child something back that was taken from her at the age of one when she contracted meningitis, Up until then she was a young girl that God had gifted with all of her 5 senses and that was taken away because the doctors couldnt do anything then why cant the parents then now decide to let the doctors give her a chance to have what was taken given back to her. I believe Jorgas parents made a decision based purely on the fact that something can be done to give her sense of hearing back but I would say that it would have been a hard and emotional decision to come too! Everyone will have comments and opinions about what any parent decides for their child. That doesnt mean they are bad parents or that they are risking their childs life, they are just trying to what they feel is best for their child no matter what anyone elses opinion will be. I hope that Jorgas mother is a strong lady and can deal with the likes of alot of comments on this Blog, as I feel alot of these comments are cold to the fact that a parent ultimately has the decision to decide what is best for their child
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