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??' "
Thursday, May 17, 2007
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21 comments:
This is just plain nuts. It is a stigma to be Deaf. To the eyes of many, we’re impure beings. The human race is defective in that perspective.
I read about this. It's pretty scary and sick at the same time.
When I saw that picture of the girl's parents holding her and the girl is swinging happily...
Honestly, that picture upset me. Because that girl probably doesn't realize the position her parents are putting her in. She doesn't realize that there is a world out there where she can survive just fine if she was given the right tools- without any type of surgery.
That's how far audism goes. It's a sad situation.
Erick Ketcham
You are right. This is far too invasive. The BRAIN STEM!?!? Geez. Haven't these people ever watched House M.D?? Or, I don't know, met anyone who is a parapalegic from a horrible diving accident where they damaged their brainstem. I'm sorry, but deaf and driving is better than hearing and sitting around in a vegetative state. And it's not even REAL hearing anyway. Plus, you can learn ASL, or whatever her country's native sign language is. For pity's sake. I am glad you wrote about this.
No, you aren't overreacting. The brainstem is the most primitive part of the brain, concentrated on life support functioning. Out of six parts of the brain, this part may be best left untampered.
Likewise, I choose deafness over death and possible severe brain damage. That's no brainer! The parents, the medical doctors, and the public lose sight of the fact this deaf child is a living breathing person capable of thoughts.
This does not surprise me at all. The book "Technopoly: The Surrender of Culture to Technology" written by Neil Postman explained why very large majority of people have love affair with the technologies. They look to the technologies to make their life much easier. The technologies sell themselves very well.
What you are seeing now is a good glimpse of how much people are willing to interface with machines in the future. Think of the movie trilogy "Matrix".
Joseph Pietro Riolo
josephpietrojeungriolo@gmail.com
Public domain notice: I put all of my expressions in this post in the public domain.
Phew! You said it!
We need laws to prevent desperate parents and overeager surgeons out to make a name for themselves from invading the brain, especially of children too young to make informed decisions or too immature to evaluate the risks.
Personally, I'd rather have a normal deaf child than a surgically damaged child, or even a successfully wired-up cyborg who will have side effects the rest of her life in exchange for partial hearing.
Parents who are in such denial that they cannot face having less than a perfect child should give up the "defective" child for adoption by more accepting parents.
The surgery took place in New Zealand.
As of now, American parents have the right to choose surgical procedures for their children. However, if this happens in America, will this ever get the attention of child protection agencies and medical ethics boards or not? Or do they feel the parents are justified in pursuing a risky, life-threatening surgery for a non-life threatening condition?
It's a matter of time before this procedure will be performed on deaf children in this country.
"stay the hell out of our deaf children's brains unless it is necessary to save their lives!!!"
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.
To all you "witch hunters". Would just listen to yourselves.
(1) If you bothered to research this little girl, this surgery was NOT done in New Zealand, she is a New Zealander, who had the surgery done Melbourne, Austraila.
(2) They HAVE tried implants which failed.
(3) This WAS NOT an easy choice for the parents to make. They agonised over this for months. You make them out to be monsters, which I can assure you they are not. You all have no business commenting on their situation as you have NO IDEA of their circumstances. Shame on you all. And shame on you if you are deaf and are offended by what they are doing - there is nothing wrong with being deaf, however, they love this little girl with all their hearts, they just want the best for her. I would do the same if it were my child. Are you there when she gets fed up with not being understood?? Are you telling me there isnt one moment in your life that you wish could hear perfectly? Not one moment that if someone said to you - you can have the surgery, that you wouldnt jump at the chance??? I am sorry I just dont believe you if you say no. Could there be a ring of jealousy in there perhaps??? If you dont care about your deafness why are you on the net complaining and commenting about someone/something you know nothing about - why do you care??? She is fine, the surgery went well and her recovery if fantastic.
Deaf people are NOT impure beings, they may be to a small minority, but you guys are doing the exact same thing to these people!!! So what if they decide to try for this? Isnt that their choice?
These parents would accept Jorja (by the way none of you can even use her name for pitys sake!!)if she was deaf or not, they love her just the same. They are not doing it to make themselves feel better.
I Have just read everyones comments and opinions on this matter and I can understand some of the fears and anger that you all have but at the end of the day, For one whole year this little girl did have the sense of hearing and that was taken away from her due to meningitis. Now if the doctors and scientists couldnt save her hearing then why cant the parents that have the opportunity now to rectify that by letting her have the surgery! I do not beleive for one moment this decision was taken lightly by any means at all, but as I have experienced personally what meningitis can do to young children I myself would have tried anything humanly possible to give my child that opportunity. I think we have to remember Jorja was not born deaf she was a hearing child! Some of your comments I feel are to make yourselves feel validated in knowing that Yes there are some parents out there that will do anything for their children but at what risks, I for one would goto the ends of the earth for my children that is what a parent does. Risks are everywhere, when we send our children to school will they make it there or be taken by someone,or as in america be shot by a crazed person now i know that these are far-fetched but the risk is still there as with Jorgas operation there were risks but they werent founded. So to end my comment on it everyone of us that have children are reasonably risking their lives everday just by letting them LIVE!!!
Jorja is three years old. her parents are her absolute heroes. When she is thirty they will still be her heroes, even more so when she has full knowledge of all the circumstances of her first few years of life. If she questions anything it will be "was there anything more you could have done" and the answer will be "we did everything we could".
And she will love them the more for it.
Megan and Jack have shown outstanding courage, strength and love in the face of circumstances far outside the scope of everyday parenting. How easy it must be to stand outside of that and rant your self-righteousness. Only a person who does not know them could ever call them arseholes, or question their moral fibre, integrity or dedication to their child. Even then, someone would have to be sadly lacking something inside themselves.
Deafness is the loss of one of the human senses. It is NOT a badge of honour to be defended by vilifying others points of view and positions that differ from your own! For God's sake get over yourself!
Jorja will thrive in this life, on the love, support and positivity with which her family surround her. Bitter and close-minded, self-righteous dogma will not dent this child i can assure you. I am one of Jorja's four grandmothers.
To elle333:
I support cochlear implants, but I draw the line at surgery that involves the brainstem. I stand by my opinion. Your grandchild faced severe risks. She was fortunate it came out okay, but what if it did not?? Then she would not be able to say to her parents what you wrote.
elle333 said;
"Deafness is the loss of one of the human senses."
Correct on this one.
"It is NOT a badge of honour to be defended by vilifying others points of view and positions that differ from your own!"
There's many opinions on this. No one said it was a badge of honor. The major problem here is the surgical procedure. The brain stem has so much importance riding on it like life support and some other things that all it takes is one small mistake for someone to be unable to do something or dead. There are those out there who have had some surgery on the head and had a nerve or similar cut by mistake and their facial muscles are paralyzed. They're unable to even smile or anything like that.
Yes, while Jorja will thrive in a way, she can still do well even with a hearing loss. A good educational program can do as well using total communications, meaning using both sign and oral. Too many parents want a 'perfect child' and will go to expensive extents for that. If you love the kid, accept the kid no matter what. That's not love. That's perfectionism.
Check my blog for what I wrote also on this.
Jamie,
Well said. It's a very distressing situation. :o(
Erick
Surviving just fine, as someone wrote, is a poor acceptance of todays possibilities of life. Being given the right tools as you so put it is exactly what Megan and Jack are doing only their tools are far more advanced than those you are describing (I expect they are unavailable when you were younger). Those of you who have judged someones happiness and feelings from a picture, or used words that cannot be printed in order to describe people you do not know, I believe your life (if you have one) is in need of a wake up call.
However, a deaf animal would not survive in the wild and they would not have the same quality of life that a hearing animal would, natural selection would see to there being no reproduction or continuation of deaf animals. In the case of deaf dogs and cats of course it is their owners that are allowing them to survive in a hearing world. It is only because we are such an advanced race that a deaf person/animal can indeed survive. Because of our advanced intellectual abilities deaf people can have a relativley normal life.
If you could click your fingers and make a deaf person hear, is there anyone who would say no to that?
If indeed you are a parent of a deaf child reading the situation about Jorja and you feel that there is no way you would go through the procedure of ABI in order to potentially restore some hearing ability for your child then that is your choice (not your childs!) you will have decided that you are prepared to help them grow up using sign language and that you are not going to regret that your child cannot hear the things that the other children/adults can hear, you are not being cruel just accepting and I respect those parents for their decision.
Megan and Jack have weighed up the options and considered that their little girl deserves to be in the majority of the population and deserves the chance to be a part of a hearing world. If anyone thinks that their decision was made without thought or complete and thorough communication with all the specialists involved, you are seriously mistaken. Jorja is unlikely to hear like a nondeaf person but her world will indeed be changed for the better if some element of her auditory system can function on an improved level.
With regard to what seems to be bothering everyone THE RISKS, has anyone actually looked past those scary words THE BRAIN. One of the high risk parts of the procedure would have been general anaesthesia......how many parents have put their children under general anaesthesia in order to have gromets inserted? I see no protesters here! If your child broke their arm badly would you wait until they were old enough to decide whether they want it fixed or not? Why is deciding if a child would choose the opportunity to hear something, more difficult for people to accept as a parents right, than deciding if your childs broken arm should be cast in order to make it look and function normally.
I am very proud and impressed with the way in which Megan has embraced the opportunities to restore hearing to Jorja. Without people like Megan, Jack and Jorja we would not be the advanced intellectual human beings some of us are. There are other children in the world who have had this operation done and indeed there are many children in the world having more serious brain surgery as we read this. There are risks all throughout our lives as mothers and fathers we are made well aware of this prior to conception. Why don't the PC people out there realise that children are children and it is their parents responsibility to make decisions for them, do they not realise that a baby cannot actually make decisions and that it is so called "grown ups" deciding when they are capable of these abilities.
Let parents be parents. Let each parent make their decisions for their children as they wish and without disregard for the decisions other people make. Let Megan, Jack and Jorja receive the credit and well deserved praise for their exemplorary efforts as a truely loving family. I know that Megan and Jack would show nothing but compasion to someone else in their position who decided against ABI, why should it not work the other way round.
Hears to you Megan, Jack and Jorja.
We are all entitled to our opinions and choices in life. As parents we make the best we are capable of for our children, and for everyone that means different decisions. Megan and Jack made theirs based on facts from their medical advisors and would not have chosen this option if the risks were too high. They love Jorja who is a beautiful girl, brave and strong and are not searching for perfection in Jorja, simply the opportunity to give her the best they can in this judgemental world. Lets get real - whilst she might be happy if she remains profoundly deaf, her opportunities will be less in life and I for one fully support Megan, Jack and Jorja in the process they have been through. I know they agonised over their decision and it wasn't made without a lot of thought, research and questions. If it was your friend or family member would you be this critical... beware because you just don't know what life might bring you in the future and what choice you might make faced with reality rather than what you think you know.
Most of you people who are against Jorja's parents decision clearly watch too much TV!!! You probably had no idea where the brainstem was before reading the articles. In fact did you even know about the procedure? People who can take aboard facts outside of TV shows are the ones that make the difference. I expect you think all hospitals are like the ones in your favourite medical drama.
To the anonymous person who doesn't know what the native language of New Zealand is I suggest you look outside America (I bet that is where you are from!) there is a whole world out there! New Zealanders speak swanquangi didn't you know that!
To Dianrez: The parents are not desperate they are intelligent and using all the resources outside of the standard acceptance to allow their daughter to experience a normal life. These are the sort of people who go the extra mile throughout life.
To Jamie: to alot of animals restoring hearing would be saving their lives,they would otherwise not survive, so you can argue the fact this is infact saving her by reducing her disability.
To Macgyver Bond: If you feel that giving a child the potential to hear is perfectionism then you clearly feel that deafness is a huge restriction and are obviously jealous of the opportunity Jorja's parents have given her. Is everyone who can hear perfect? No just normal.
I wonder how many more children or adults will be given the opportunity of improved auditory stimulation as a result of Jorja and her mum and dad.
I take my hat off to these amazing parents, who just have so much love for this little girl and want her to have the best she may be able to get. Jack & Megan don't ever doubt what you have done, I would have done the same for my children. I hope all works out well for you all and all my love to Jorja you are a brave little girl.
Evidentally these brainstem implants are not only used to "help" the deaf. I met a man who claims he had one installed, over fifty years ago. He claims that two way communication is involved, and that someone out there knows what he is thinking. No info on this on the web though...
I am the hearing parent of a Deaf child. I find the pursuit of a "cure" for deafness disgusting.
My daughter lost her hearing due to medication. She has born hearing. At 12 months her hearing was still normal. At 18 months she was diagnoised with a 60 db loss. She has been slowly dropping since then.
My daughter is now 4 1/2, she attends a bilingual bicultural school for the Deaf. She has amazing ASL skills. My husband and I work extremly hard to provide her good Deaf role models and to be active in the Deaf community.
I believe if parents of deaf children put the kind of time and money into education as they do into surgery and therapy the face of deaf education would be changed forever.
How can a responsible parent read the literature and come to any other conclusion? Deaf children exposed to sign language do better in ALL aspects of education than those who aren't!! Get over changing them! Get over "fixing" them! If your child is deaf they are different. They will never see the world in the same way you do. It isn't better or worse, just different. You are making a choice that is not yours to make. You are permenatly changing another person's body. Yes, you are their parent, but that does not make it your's forever.
Parent's I beg you, speak to Deaf adults, learn from their wisdom. Your child will be one someday. What did their parents do? What do they do with their own children? Learn to see the big picture. Your children will be adults someday and when they look back will they be thankful for your choices, or angry because you never understood them?
As a hearing New Zealander I was dismayed to read about this story. But one has to ask... where were the NZ Deaf community in all this? Hearing parents typically report feelings of intimidation by the Deaf community. While I wholeheartedly understand the Deaf communities anger... why not go up to Jorja's family and say Hi! I see you have a deaf daughter! Congratulations! I would love to share my language and culture with you!! Infact, I didn't hear a peep out of the NZ Deaf community. It's taken Deaf overseas to even comment on it!
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