Thursday, September 10, 2009

Conundrum – Why Parents Make the Decision

Many Deaf children’s advocates recommend waiting to implant until the child is old enough to decide for him or herself if they want to get an implant. If all else was equal, I would be right there with them. The problem is that for the implant to be successful, the brain needs auditory input during the critical first three years. If hearing aids work for the child, great, waiting is good. However, for the profoundly deaf infant, hearing aids are rarely adequate in providing the needed auditory information across all the pitch ranges necessary to acquire verbal language. Therefore, waiting for the child to decide is the same as choosing not to implant at all. Because the chances are good that if you implant the 10 year old child who has had little to no previous auditory input, the implant won’t work for them. It is not that the implant can’t give them sound, it is that the child’s brain is no longer able to adequately process that sound into meaningful information. So parents actually have no choice about letting their child decide. If they choose to wait and let their child decide, they ARE deciding. They are choosing not to implant. To implant or not to implant is by default, a decision the parents WILL make, whether or not they even recognize that they are the ones doing the deciding.

If you truly believe that this is a decision the child should make when they get older, how do you address the reality that by the time they get old enough to decide, they are too old to make good use of the sound the implant will give them? Again, we are only talking about profoundly deaf infants who do not get adequate use of hearing aids.

K.L.

18 comments:

MM said...

Then point is, they do not want implants to take place, either at early age or even at adult if they can oppose, so are not inetrested in the reasons when they take place or why parents choose them. Obviously they also know, that leaving a child deaf until age of consent where the CI would eb almost totally ineffective to them, is just why they push for that, it's too late then and bound to fail, this further supports their 'theory' about them. So you are on a loser every time. Some are never going to support CI's ever, so not much point trying to reason with them.

Joseph Pietro Riolo said...

MM is quite correct. Their insistence that the parents should wait until their deaf children are old enough to decide on their own whether they want to have cochlear implant is only a camouflage for their opposition to cochlear implant.

Joseph Pietro Riolo
josephpietrojeungriolo@gmail.com

Public domain notice: I put all of my expressions in this post in the public domain.

Sara said...

I tell them:

If the child doesn't want to wear the implant and they have firm reasons for it, then let it go.

At the same time, we need to keep the CI child aware of the Deaf world- just as an option. It's never too late to learn ASL but it can be too late to implant a child and get full intelligible speech.

Anonymous said...

For any language learned later is still late. People who learn ASL in later life do not have same fluency as those who learn during early years.

Let have both at start and have the best of everything.

Dianrez said...

Insurance companies are now publishing position papers (they have to pay for these operations, so formulate guidelines for decisions.) Many of them review the existing literature on success and failures of the CI.

Because data yet available is still limited, the papers generalize as follows: (in part)

Children who have had hearing before the age of about 5 do better with implants than those who never had hearing.

The more time one has had in hearing, the higher the success rate.

Success is defined differently in different papers. Some consider identification of basic sounds in a sound booth as success. Others mention ability to distinguish words or phrases. The number of subjects is limited and matched controls are nonexistent.

So far, not enough evidence has been published. Saying that implanting a child early in order to develop auditory input is still a hypothesis yet to be proved in the years to come. The evidence that hint at this are at this time indirect and limited.

Some insurance companies are willing to pay for this in babies on a benefit-of-the-doubt basis. Not all, though.

Sara said...

I agree. I think that it will take probably another 10 years as it wasn't until about 1990 when FDA did finally approve CI surgeries for children. I got mine due to clinical trial in 1989 and I am actually doing fairly well. But there are still some things that are side effects of delayed language like my grammar tenses and the use of "the". Most of people in my age (early 20s) only got theirs in early 1990s, when they were in elementary school. As far I know, they are doing well but struggle a bit with their communication.

But you also need to remember, I think, once the child hears sounds and has CI from very early age, it really becomes part of WHO they are, including their personality and it's difficult to imagine their world without CI. I just cannot imagine my own world without it- so many people who know me very well admit that I wouldn't be ME without my CI. Without CI, I feel like a different person, no matter how much I try to stay who I am.

Dave Walker said...

I received benefit from hearing aids for a number of years until my hearing was totally lost in '04.
I was immediatly set up with an evaluation and scheduled for cochlear implant surgery about two months later. About one year after that I was diagnosed with cataracts and had surgery to correct my vision in both eyes as well.

I have some difficulty understanding those members of the deaf community who are opposed to cochlear implants. My decision to receive a cochlear implant was a "no brainer" for me. Likewise, when my vision became impaired with cataracts the decision to have surgery to correct this was also a "no brainer" decision. If I had lost a leg in a traumatic accident and was told that I could receive a prosthesis that would allow me to walk again I would go for that as well.

I wonder if those members of the deaf community who are so opposed to cochlear implants have the same mindset towards cataract surgery or other prosthetic surgeries?

If I had a child who was born deaf or became a candidate for a cochlear implant I would definatly make the decision to procede with the surgery knowing full well that it was the right thing to do. I would rather have a 18 or 20 year old child later ask me why I made the decision that enabled them to have the opportunity to hear rather than have them ask me why I did not give them that opportunity.

Dave Walker, pharmacist
find me on Twitter @drwalker_rph

K.L. said...

I find it interesting, that of the many people who are against early implantation, not one of them has commented here to answer my question.

Dianrez, there are many research articles out there that show difinitive results regarding early implantation. This is not hypothetical.

Sara, Thanks for your observations. I agree that we need to keep all the doors open.

Dave, I am right there with you.

Dennis said...

You're correct in stating that the danger the D-deaf community postulates for cochlear implants in children is overblown. I've been seeing a number of v/b-logs that assert "many" children go to school and turn off or leave their CI off and only turn it back on for their parents. This is extremely improbable because my impression is that most of those have someone at school whose responsibility is to check up on them - teachers, administrators, special ed, support staff, etc. They're not thrust into the mainstream system without regular checks, IEPs, audiology exams and the like. It would be very difficult for a student to be sign only at school and then be "hearing lite" at home.

I support children learning sign if the parents can provide the language access to them. Without the parents being involved, learning sign would be difficult. Only once I immersed myself in deaf culture did sign language take its hold on me.

I agree that Deaf culture asking parents to leave the decision up to a child "when they're old enough" is by default crippling the entire purpose of getting language support for hearing and speaking at an early age.

So that demand is unreasonable - it'd be like saying no surgery whatsoever on children for any reason at all until they're old enough to decide if they want it, whether it be eye, ear, leg, or other body part related.

starrynight said...

I wish I could let my child decide when she is old enough but it won't work! I used to think that they have the right to decide about CI until I researched on it. KL is right that profoundly deaf children won't be likely to succeed with a CI if they decide to receive it at a later age.
It was a difficult decision for us to give our child a CI at an early age because we are part of the Deaf community. We would rather give our child a CI in the "window of opportunity" at an early age and she can decide to take it off when she gets older but I don't think so because she has been asking to use the CI all the time for the last few years. So, she can't seem to live without the CI.

Anonymous said...

I am 32 years old and just got my CI 2 months ago. I am blown away with how much I gain from it and how much I enjoy it. My parents have told me they of course would have gotten me a CI in a heartbeat had the technology been available when I was born. We also have two deaf daughters (ASL is primary in our household). One of them has a CI too, at 2 years old, and is doing quite well with it. and she's only getting started! I cannot imagine if in 15 years she were to ask us, "why didn't you get me a CI at the time?" Life's too short- use every reasonable opportunity you can get to enhance your child's access to different senses.

Anonymous said...

camouflage or not, i think the goal needs to be revisited.
where are we going with this?
will ci person earn $250,000 a year?
will ci person be happier cuz the person can fit in both worlds?
this is not a life or death situation. more like a matter of convenience, but for whom? the ci person or the able-bodied ?
tell me again the benefits-

show me one ci person who is 30 years old and happier? so far you cant !
yet a few of ci people are over here trying to marry my deaf daughter who doesnt have ci...and i tell them to go back where they come from.

"Let have both at start and have the best of everything"
I agree! some of us already do..without the ci.

.

K.L. said...

Anon, prejudice is ugly, especially if it is against other deaf people who simply chose to use an assistive device you don't care for.

I personally know quite a few adults over 30 who love their implants.

If you are saying that you know of no over 30 year old who was implanted as a child who likes their implant, you may have a point. The earliest childhood implant was done just over 20 years ago. Which means that anyone who was implanted as a child and is over 30 was implanted as a teen. In my opinion, teenagers were probably the worst group to implant. Their brains were no longer receptive enough to the sounds to do well, and they did not have the resolve of an adult to stick with it and make it work. In addition, there was not nearly the understanding of what was needed that there is today. I believe many of those kids would not be considered a candidate if they were to be evaluated for an implant today.

However, rejecting you daughter's boyfriends simply based on whether or not they have an implant is immature and demeaning on your part.

kim said...

Fortunately parents have the final say in all matters regarding their children. That's how it should be.

MKChaikof said...

Dianrez,
No data? Perhaps you haven't been looking:

Cochlear Implants Int. 2009;10 Suppl 1:28-32. Links
Early language outcomes of children with cochlear implants: interim findings of the NAL study on longitudinal outcomes of children with hearing impairment.
Ching TY, Dillon H, Day J, Crowe K, Close L, Chisholm K, Hopkins T.
National Acoustic Laboratories, Sydney, Australia. Teresa.Ching@nal.gov.au
This paper reports interim findings of a prospective study that examines longitudinal outcomes of early- and later-identified children with hearing impairment in Australia. Eighty-seven children with cochlear implants were assessed using the Preschool Language Scale at one or more intervals. Results demonstrated that children who received a cochlear implant before 12 months of age developed normal language skills and at a rate that is comparable to normal-hearing children. Children who received later implantation performed at two standard deviations below the normative mean.

Acta Otolaryngol. 2009 Apr;129(4):361-6. Links
Long-term follow-up of infants (4-11 months) fitted with cochlear implants.
Colletti L.
ENT Department, University of Verona, Verona, Italy. vittoriocolletti@yahoo.com
CONCLUSION: In this study the outcomes from several indices (Category of Auditory Performance, CAP; Peabody Picture Vocabulary Test (Revised), PPVT-R; Test of Reception of Grammar, TROG; and Speech Intellegibility Rating, SIR) in three groups of children with different ages at implantation (from 4 to 36 months) with a follow-up time from 4 to 9 years demonstrate that very early cochlear implantation (<11 months) provides normalization of audio-phonologic parameters with no complications.

HNO. 2009 Jul;57(7):657-62. Links
[Long-term functional outcomes of cochlear implants in children]
[Article in German]
Laszig R, Aschendorff A, Beck R, Schild C, Kröger S, Wesarg T, Arndt S.
Universitätsklinik für Hals-, Nasen- und Ohrenheilkunde und Poliklinik, Universitätsklinikum Freiburg, Freiburg, Germany. roland.laszig@uniklinik-freiburg.de
The treatment of deaf and hearing-impaired children with cochlear implants has been established for several years. Nonetheless, no long-term results exist for studies of a representatively large number of children in the German-speaking area. These are necessary in order to formulate prognoses regarding the development and results of children undergoing implantation at various ages. In a retrospective study, we assessed the data of 156 children with various implantation ages and a minimum follow-up period of 5 years for whom speech and audiological data (Oldenburg Sentence Test, Freiburg words/numbers test) were available. Our findings confirm the assumption that early-implanted children (<2 years) achieve the best speech-comprehension results.

I could go on. There are many, many scientific research studies showing unequivocally that early cochlear implantation makes all the difference for a child's comprehension of spoken language and development of spoken expressive language.

Brenda said...

I can't imagine why anyone would not want their child to have the opportunity to HEAR?? That just blows me away. My grandson received his CI when he turned 1-1/2 years old. He is doing excellent with it and we are so BLESSED.

From the moment in the hospital when he was born and he failed the hearing test 2 times and then after more testing told by an audiologist that he was profoundly deaf in both ears just broke my heart. I couldn't help but think of all the beautiful things/sounds he would miss, birds, laughter, music, ocean waves, the sound of his family telling him how much they loved him, etc. He is learning new words everyday and is the happiest little angel I know.
Any parent that denies giving their child the most opportunities possible in life are not very good parents. I would give my beating heart to my child if they needed it and wouldn't have to think about it for a second!

Brenda said...

Shame on someone that would hold back a child from hearing when it could be corrected. I realize some people don't recognize deafness as a disability...BUT it is! Wake up.

Sara said...

@Brenda

To say that hearing can be "corrected" is inappropriate in front of the deaf. This was the mentality when CI first came out 20 years ago. It's not "correction" for that if the person is NOT wearing the speech processor, the person is still deaf. So how is that "corrected"?

Also, Deaf and CI people don't view their "deafness" as disability unless they believe it IS. I have had my CI for 20 years and I do not see my deafness as a disability because my CI and personal outlook have enabled me to do SO many things... that to be called someone with disabilities is a major offense to me.