Deaf children's parents must decide on surgery

Monday, November 1, 2004
Deaf children's parents must decide on surgery
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By Cliff Radel
Enquirer staff writer

To implant or not to implant? That question arises when a child is deaf.

The child's family wonders what is best for the hearing-impaired: to learn sign language or to have a cochlear implant. The latter is a thin, disc-shaped device surgically placed under the skin behind the ear. The implant employs an electrode placed in the inner ear which, when stimulated, sends signals to the brain so the person can hear.

For Dr. John Greinwald, assistant director of the Center for Hearing and Deafness Research at Cincinnati's Children's Hospital, the answer is not clear.

"It's not a black-and-white decision," he said. "It's often a combination of manual communication - sign language - and aural communication, speaking."

In the child's first year of life, he encourages "all families to use visual and spoken communication." Studies have found that both forms of communication "light up the same part of the brain."

Dr. Greinwald sees 200 hearing-impaired children a year. He annually performs "45 to 50 cochlear implant" surgeries.

Cochlear implants were approved for children in 1990. They help deaf people learn how to speak. Schools such as Montgomery's Ohio Valley Voices teach deaf children, using hearing aids and implants, how to speak and read so they can enroll in mainstream schools

With each patient, Dr. Greinwald explains the pros and cons of implants and sign language.

He begins by asking his patients' parents: "How do you want your child to interact with the world?"

To lighten the mood, he adds: "When you tell your teenager to clean his room, do you want him to talk back with sign language or give you lip?"

For information about the Center for Hearing and Deafness Research, visit www.chdr.org or call (513) 636-4356.

http://www.enquirer.com/editions/2004/11/01/loc_loc3b.html

I'm disagree to this because it's CHILD's and ADULT's alone choice, not parents.


What do you think? Share your opinion and discussion with us here.

I respect every parents's opinion for their decision to give their child CI or let their child have decision.

Working with Deaf children I have seen both sides of the coin here and have had countless heated discussions with my husband. I asked him one day if we were to have a Deaf child would he want a CI, much to my surprise he said yes without a doubt. His arguement was that to get on in life the child would need to be able to communicate in a hearing world. I disagreed. I have seen Deaf children quite ably communicate within a hearing world with the aid being a Hearing Aid. Not all our staff at school are proficient in BSL and we all still manage to communicate. Even in the outside world I have not seen this as a problem. As for a Deaf child being able to speak, we have a Speech and Language therapy programme that aids them here. I do not mean forcing them to speak but aiding their understanding of the spoken word and how to make themselves understood.
I have seen the effects when a CI doesn't work and its effects on the family. I have also seen the confusion it can cause the child when they fell they dont belong to either world.
In my opinion I would have the child make an informed decision on their choice whether to or not and I fell that I couldn't with a happy mind take this right away from them.

It's up to PARENTS' choice.

One of the biggest reason I am for child CI surgery is because they adapt easier and better to CI sounds and speech as children, so if they have it as an adult or teenager, they may not have the same results if they had it as a child. Their brain plasticity is much greater. That's why it's very difficult to only leave it up to children when they are older. It's a tough choice. I have seen children as young as 5 years old be included in the process to choose or not to choose. They are usually pretty smart children.

Leibling, you know how I feel about children being implant in their youngest age that has absolutely NO decision on whether they want one or not...Some parents just believe that implanting their children with CI will only do what best for them by being able to hear, speak , and develope their language skills...<< which is true, it does help a child if they are implant in their youngest age but still the number one question you need to know is that if that what your child really want or is it something YOU ( the parents ) would want to see for their children.....

I still stand for what I believe that a child should be the main role on making that decision since they're the ONES who are going to wear them for the rest of their lives, and beside CI is not something you can remove when no longer want to wear them anymore like you do for hearing aids....I believe that using hearing aids on youngest children who are too young to make a choice WOULD help them hear, speak and also help develope their language skills....until they reach the age of 7 and is able to understand how and what CI does for them, then the child and the parents can sit down and talk about this TOGETHER.....It takes two or more to make that choice....

I have always believe that whoever wants a CI is the ONE who is going to make that choice themselves, whether they like it or not...If the child does not want a CI then you have no right to force a child to get one cause YOU will be the one hurting your own child, think about that one for a moment there.....

You know another thing is I've heard some parents had said that their child is really happy about their CI , but maybe they're happy for now since they are not aware that there are more out there beside CI, and since they are too young to understand it, but when they do, the question is , will they still wear them? will they be upset with you when they didn't have a choice in this also?...there's so many questions that may happen later on in the future, but are you ready to answer all the questions your child will ask?...hmmm...

Tamara said:

It's up to PARENTS' choice.

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I second that.

I believe that using hearing aids on youngest children who are too young to make a choice WOULD help them hear, speak and also help develope their language skills....until they reach the age of 7 and is able to understand how and what CI does for them, then the child and the parents can sit down and talk about this TOGETHER.....It takes two or more to make that choice....

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Yes.....according to Auditory-Verbal International 95% of deaf(meaning severe-profound) kids have enough residual hearing to benifit significently (meaning that they can learn spoken English easily) from traditional aids.
I think some people are jumping the gun when it comes to early implantation....Yes there are a percentage of deaf kids who qualify for the implant right off and who have absolutly ZERO benifit from aids....but there are also kids for whom implantion benift would be ambigious. I just think that in some cases, the parents and kids should decide TOGETHER about the implant.

deafdyke said:

I think some people are jumping the gun when it comes to early implantation....

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I absolutely agree with you there Deafdyke, also I heard some parents who has already made a decision on having their child implant, and isn't sure if their baby is Deaf yet....Wow, talking about jumping the gun here LOL...

Allowing children to make heavy-duty decisions like the above is absolutely absurd! Where are the parents? In diapers? LOL!

deafdyke said:

Yes.....according to Auditory-Verbal International 95% of deaf(meaning severe-profound) kids have enough residual hearing to benifit significently (meaning that they can learn spoken English easily) from traditional aids.
I think some people are jumping the gun when it comes to early implantation....Yes there are a percentage of deaf kids who qualify for the implant right off and who have absolutly ZERO benifit from aids....but there are also kids for whom implantion benift would be ambigious. I just think that in some cases, the parents and kids should decide TOGETHER about the implant.

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I agree. To elaborate on hearing aids...I think they need to have a good period of trials with them before they decide on a CI. If it seems that they would benefit much more with CI, then why not? A CI can bring hearing much larger than a HA can. I can't make my HA better than my CI, but if I had it earlier--I would have benefitted much more which is why I am for it as long as they give everything a fair trial.

It's a tough decision...

Parental Rights

The right of parents is usually upheld. However there are enough anti-Deaf parent laws that make the use of parental rights questionable in the case of CI. For example, the state of Oregon requires that infants who have 2 deaf parents parents be tested for developmental delays -- even if both parents are college educated, one being a doctoral candidate. I found that experience absurd and wondered what happens to parental rights when they favor a pro Deaf culture view. Parental rights suddenly seem to vanish as most observed in the case where the state of Michigan, which did not even have permanent custody of a child, sought to have the child implanted.

Moreover, the issue of parental rights presumes that parents are fully and accurately informed. However, all one needs to do is go to the December 1993 issue of Atlantic Monthly where Dr. Loeb proudly proclaimed that Deaf culture would end in less than 10 years. It gets worse. Dr. Loeb did not identify himself aas doctor and he especially did not identify himself as the senior medical consultant for advanced bionics at the time. He didn't report his patents in CI technology either. Obviously he had much to benefit from financially and yet parents reading the magazine and his anti-Deaf editorial would have no clue of his financial agenda.

It gets worse. In 1996 Balkany et published an article concerning CI. If they stuck to the CI that would not be a problem. However, they made monumental errors when they cross over and decided to discuss Deaf culture. They argued as did Bertling that children are sacraficed to Deaf culture. The presumption that Bertling's work was without error suggests the authors failed to adequately research the topic. Moreover they made an assertaion that Deaf must be disabled because some deaf apply for SSDI. The validity error is huge and they provided no empirically verifiable numbers on how many Deaf are actually collecting SSDI benefits. Moreover, there are some states which require a person to apply for SSDI before they can apply for public assistance if needed. The very claim that Deaf universally apply for SSDI and is proof of disability is bogus. Balkany has been the chair of a CI center for many years now and has yet to learn about DEaf culture.

With doctors asserting that Deaf culture is a deficient culture and one that the world would do better without, it is little surprised that some parents are confused in the matter. In countries outside of the US, some require that the parents consult those qualified to discuss Deaf culture. The "experts" in deaf culture have no business giving medical recommendations, but the medical experts have no business critiquing one culture as being allegedly superior to another culture.

Respect parental rights - sure - so long as you include Deaf parental rights too. Respect ignorance of medical specialists who know little or nothing about Deaf culture - no way!

deafnicity

Deafnicity, ^Angel^, Liebling, Deafdyke, CindyUK...I agree it's vital that both Parent(s) and child can come to a decision together regarding CI's, although, the age of 7 sounds appropriate, though, imo, I would go with 8 and above and most definitely not newborns, young babies even if the perception of the fact that they might do quite well by adjusting to the sounds around them at an earlier age, but the bottom line simply is that the child is the 'one' who has to LIVE with this decision regardless who else may have been involved in the decision process-making....

With the post Deafnicity recently made, it's quite understandable to a point of the so-called experts or doctors for their findings and/or their purposes WITHOUT actually living in the 'shoes' of Deafies/Hoh, then their researches and findings would NOT be confusing Parents alike for their ridiculous statements such as wiping out Deafness in 10 years! Perhaps a few GOOD doctors out there DO strive for a common ground for the well-being and sake of Deafies/HoH all over and helping Parents to BETTER understand the complexities involved for us Deafies/HoH!

Ahh...*stepping off the soapbox*...

However, all one needs to do is go to the December 1993 issue of Atlantic Monthly where Dr. Loeb proudly proclaimed that Deaf culture would end in less than 10 years.

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*snort* Well that was over ten years ago, and Deaf culture is still alive and thriving. Many "medical" experts are audists and think that the hearing culture is so good that there's nothing of value in deaf culture. However even many hoh kids and auditory-verbalized kids pick up Sign as a second language.

I find it funny that most who do not have CI have a tendency to say this, but then some of you don't know what it's like to live with a CI. Some of you make it sound so bad. I have a CI, and it's not a monster to live with it. It's not like wearing a refrigerator in your ear. When the CI is off, there's no hint of the CI. I don't even feel it. It's like I don't have one. Just like hearing aids, we get used to it, except the CI is an implant while the HA is not. It's an implant and not removable IF you don't have the money, but...............?

It's a hard decision, but I think there are many happy CI children that are grateful for their parent's decision to have done that for them. I would have been really happy. I have no doubt. It's unfair to say even if they wouldn't have done well. There are some CI adults that realize how much better it could have been as children.

There are still parents who make decisions for their children even if they are 7 or above in their teens. No decision is better than any others which is why I feel it's best to leave it up to the parents and no limit on age, but to reconsider the criterias for implanting children especially have some sort of psychological therapy to ensure it's very thoroughly thought.

In fact, there's no one with CI that I know of responding here...hmmm. You understand once you go through it.

oh boy! i hate to hear that!!! oh well i do agree with ^angel^, Liebling)), and RR abt that..

Angel and Roodrunner!
Your post are real wonderful and know how the children feeling. You said this so prefectly. It's an exactly what I think the same as you! Sit together with children is a most communicate key. They would lost their respect on you if you don't do it.

I would like to give you an example about my 8 years old son. He has floppy ears (see the link). I already told you about this in other threads and forums.

This is the same example as CI condition.

http://www.drloomis.com/Otoplasty.html

you can see some animals's ears are down, not sticking up in air.

I want my son´s ear to be correct before start his first school but he rejected it.
The reason, I´m worried about him because schoolmates could be cruel & make fun of him.
The communicate is a key is most important instead of force and get him to surgery to change his ears.
I sat with him explain why I think it´s best to correct his ears. The doctors also talked him, too. All what he say: No. We respect his wish because he´s happy what he is.
I´m surprise that his friends accept what he is but some of them make fun
of him but my son is too smart for them.

Anyway, the doctors told me that it is not too late for him to change his mind for want to have surgery one day. Leave it until he feel want to have one, then...
I told him that I will be happy to support him anytime if he change his mind one day.

The example is the same as CI.

Would you force your children to do something or change their bodies when they dont want?

I would not change my son´s body because I accept what he is. It prove that I love him what he is.
I would not change my son´s body because he didnt ask for it.
My son would lost his respect on me after learn that I want to change his body because I don´t like his body.

I would wear my baby with hearing aid, prothese or glass without surgery.

Correct ears, CI, improve nose etc belong to comestic surgery.

I would change my child´s body if there´re an emergenery to save their life like heart diease, etc.

Comestic surgery and saving risk life surgery are the big difference.

My friend´s 6 years old daughter want to have CI. She is happy to support her daughter´s wish. She will have CI surgery after New Year. Her daughter is willing to learn speech development which it´s good.

TiaraPrincess said:

It's a hard decision, but I think there are many happy CI children that are grateful for their parent's decision to have done that for them. I would have been really happy. I have no doubt. It's unfair to say even if they wouldn't have done well. There are some CI adults that realize how much better it could have been as children.

There are still parents who make decisions for their children even if they are 7 or above in their teens. No decision is better than any others which is why I feel it's best to leave it up to the parents and no limit on age, but to reconsider the criterias for implanting children especially have some sort of psychological therapy to ensure it's very thoroughly thought.

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Perhap for you but not for me. I received unhappy stories from CI users. Example about my good friend.

She lost her respect on her parents because she had been forced by them to get CI when she was 11 years old.
She already told her parents that she don't want CI but her parents ignored her wish and do anything powerful to get her to Surgery.
The reason she broke her contact with her parents.

She told me sad story about her parents but she's not only one. I often heard the unhappy stories.

Hearing parents are regret what they done to their deaf children. All what the children do is aggressive against their parents. It's sad that they lost their respect on their parents for that.

I beleive it would be nice to let the children to have their decision. Of course the parents sit with them to have a good talk and support etc.

There're interesting story from former CI user's side from other forum. Her story doesn't surprise me because I heard about these stories often.

deafnicity,

Thank you for sharing your interesting information here.