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STATEMENTS AGAINST IMPLANTATION

  Opinions of C.C. Estes from NAD (National Association of the Deaf) gives the following arguments against CI

RISK

General Anesthesia is always a risk.

Surgery. No matter how slight, all surgery carries a risk factor.

Risk that the CI child will not learn spoken English well. Learning spoken English is extremely difficult for any deaf child, regardless of method of intervention.

Risk that such child, in turn, will not learn ASL well. Demands in terms of time and effort may unwittingly preclude mastery of ANY language.

Risk in delay in accepting deafness on part of child and family.

Risk in the unknown. To use an argument others have advanced before, Dow-Corning quit making silicone breast implants.

PARENTS LACK INFORMATION

Deafness is not life-threatening. There is no evidence that the implant must be done while the child is young. The surgery is not life-saving.

Decisions are made by families wishing the child to be "normal."

The child may turn out to be neither culturally deaf nor culturally hearing. There are plenty of living examples.

MEANINGFUL EVIDENCE LACKING

There is no evidence of material benefit to the deaf population.

There is no evidence that speech perception is enhanced.

There is no evidence that the implant enhances acquisition of language.

There is no evidence that children with the implant will enjoy greater educational success.

There is even evidence that, in profoundly deaf children, conventional amplification enhances speech perception better than the CI.

ETHICALLY WRONG

Invasive surgery should be reserved for life-threatening situations, not simple life enhancements.

Offered the choice, knowledgable adults overwhelmingly reject the implant.

Decisions are made for defenseless children when long-term effects are still unknown.

The surgery makes a life-time commitment for the child.

COCHLEAR IMPLANTS IN CHILDREN

A Position Paper of the National Association of the Deaf

Background: On June 27, 1990, the Food and Drug Administration (FDA) approved the marketing of the Nucleus 22-channel prosthesis for surgical implantation in children aged two through seventeen. (Commercial distribution for postlingually-deafened adults was authorized in 1985; investigational trials began in adolescents, age ten to seventeen, the same year and in young children, age two through nine, in November 1986.) This recent FDA approval of marketing childhood implants, recommended by its Ear, Nose, and Throat Devices Panel, was based on a submission by the manufacturer, the Cochlear Corporation, which reported on a total of 200 implanted children, ages two through seventeen, who had bilateral, profound sensorineural deafness.

The position of the National Association of the Deaf (NAD): The NAD DEPLORES the decision of the Food and Drug Administration which was Unsound scientifically, procedurally, and ethically.

SCIENTIFIC ERRORS:

Implantation of cochlear prostheses in early-deafened children remains highly experimental. There is NO evidence of material benefit from the device in this population and NO evaluation of the long-term risks. There is NO evidence that the speech perception of these children is materially enhanced but there is evidence that many profoundly deaf children would have better, however limited, speech perception with conventional hearing aids THAN WITH implants. There is NO evidence that early-implanted children will do better at acquiring English than they would with noninvasive aids or with no aids whatever. There is NO evidence that early-implanted children will have greater educational success THAN is currently experienced by children of similar circumstances who do NOT undergo this invasive surgical procedure. The FDA Panel has required the device packaging to include the WARNING that congentially deaf children may derive NO benefit from the device but the evidence points to the SAME CONCLUSION for children deafened below the age of three and possibly age five OR LATER.

Current programs of research on cochlear implants with children are conducted WITHOUT regard to the quality of life that the child will experience as a deaf adult implant user. It is presently unknown whether the implant and the profound commitment of parent and child to aural/oral training that is generally required, will DELAY the family's acceptance of the child's deafness and their acquisition of sign communication. The impact of the implant and ther required aural/oral training on the child's social intellectual and emotional development and mental health, or on the child's integration into the deaf community, have NOT been assessed. THIS FAILURE alone to consider the impact of the implant on the child's future quality of life qualifies the implant programs as highly EXPERIMENTAL -- just what the World Federation of the Deaf deplored when it resolved, "[Implant developments are] encouraging for persons deafened after some years of hearing [but] experimentation with YOUNG children is definitely NOT encouraged."

PROCEEDURAL ERRORS:

The FDA erred in FAILING to obtain formal input from organizations of deaf Americans and from deaf leaders and scholars KNOWLEDGEABLE about the acquistion and use of sign communication and English in deaf children, and the social organization and culture of the American Deaf Communityu. The research evidence makes abundantly clear that early-deafened implanted children WILL rely on sign communication in school and in much of their lives. Many, perhaps most of these children will become or already are members of the American Deaf Community. Otologists, speech, and hearing scientists, manufacturers, parents, and members of the FDA staff were all consulted formally by the FDA in arriving at its decision. FDA's FAILURE to consult deaf spokespersons represents, if an oversight, GROSS IGNORANCE concerning growing up in deaf America, or, if willful, an offensive against fundamental American values of individual liberties, cultural diversity and consumer rights.

ETHICAL ERRORS:

Experimentation on children is ethically offensive. When new and high technology that entails invasive surgery and tissue destruction is used, NOT for life saving, but for putative life enhancement. Adults, such as these children will become, when given the option of such prostheses, overwhelmingly DECLINE them. The parents who make the decision for the child are often POORLY informed about the deaf community, its rich heritage and promising futures, including communication modes available to deaf people and their families. Far more SERIOUS is the ethical issue raised through decisions to undertake invasive surgery upon defenseless children, when the long-term physical, emotional, and social impacts on children from this irreversible procedure -- which will alter the lives of these children -- have NOT been scientifically established."

ANOTHER OPINION AGAINST CI

(Contributed by Katherine C. Morehouse (Casey) cmorehou@vdoe386.vak12ed.edu

Let me say here briefly that one of the reasons I have such strong opinions against cochlear implants in children, especially prelingually deaf, signing children, is that as an educational audiologist at a school for the deaf, I see and hear from parents constantly about the misinformation that they are given about cochlear implants,the misconceptions that they derive from the information they get, the lack of information that they are given about the deaf community, the tremendous pressure that is put on parents to get cochlear implants for their kids, the tremendous pressure they, in turn, put on their perfectly fine, well adjusted Deaf kids to get implants, the power struggles that are set up by this, between deaf kids and their parents, the kids not wanting to disappoint the parent, and the parent always expecting that "miricle". The anger the kid feels that "My mom not accept me deaf". And despite what any one will say they tell parents about the pros and cons of cochlear implants, I have yet to meet a parent who was given (by the cochlear implant team) a list of the "failures" to call for opinions. The Deaf adolescents who actively decide to stop using an implant put in when they were 10, --they are never asked to talk to parents, the mother of the kid, whose implant failed due to ossification of the cochlea around the electrodes,---- she has never been asked to speak to perspective parents, the child with the drooping cheek, due to a a damaged facial nerve during the implant surgery, ----she was not on TV or in the newspaper.. I really could go on and on.. but....It seems these parents are given the list of "successes" ( a short list which is used over and over again,as there are not actually a huge number of kids with these implants...so far) I have yet to meet a parent who was actively introduced to deaf adults, by a cochlear implant team, so that they could hear the other side, Actually, I have yet to meet a member of a cochlear implant team who know more than rudimentary sign language or who has any kind of active relationship with the Deaf community.. That is not to say thaty they are not out there!

CONTRIBUTED BY ALVEAN JONES jonesc94@irlearn.ucd.ie.

With all the hullaboo about cochlear implants, it seems that the main thing about cochlear implants is forgotten. They are just a form of hearing aid that requires invasive surgery, unlike most other forms of hearing aids. Doctors are so clever that they fail to understand the subtle distinctions within the sense of hearing. AUDIOGRAMS are not the be all and end all! As I perceive it, there is a huge difference between levels of deafness and what is heard. Contrary to doctors' beliefs, the two are not linked. (As most deaf people know). So what is the point of inserting a CI in the cranium of someone who would not benefit from these? Most deaf people do not hear the same sounds with a hearing aid as hearing people do. So parents out there, think about it.

***There is a BIG difference between levels of hearing and what is heard***

Psychologists would term the distinction as SENSATION and PERCEPTION. Cochlear implants help with sensation (the picking up of sound), but they do not help with perception (making sense of the sound picked up through the process of sensation.) Cochlear implants, like other hearing aids, do not differentiate between sounds, but amplify ALL sounds. Perhaps the following analogy will help clarify things for hearing people. Think of a crowded noisy pub, or restaurant. You have a recorder and record the sounds around you. You can hear several conversations around you , listening to different conversations, FILTERING out all the others. When you go home and listen to the tape playing back, What is heard is nothing like what you heard in the restaurant. Machines cannot and do not have the capacity to filter sounds. Yet Cochlear implants provide this sort of hearing for those who avail of this. Would YOU like to have this sort of hearing? Very often it does not work at all, but it helps others. It often took up to 12 years to make SOME sense of the noise picked up. 12 years that could be more constructively used doing something else. Believe it or not, worthwile lives are carried out without sound, from birth to death. (I am proud to be deaf and would oppose any attempt to "rectify" my profound deafness. Having said this, I am trying to see both sides of the argument.)

All forms of surgery are invasive, and therefore has levels of risk. Viewers in GB and parts of Ireland will probably have seen an excellent programme on this issue. For those from elsewhere, it was about cochlear implants and featured a little girl who was profoundly deaf. Her parents were thinking about giving her CI's. Her father asked some very pertinent questions to doctors. When the Dad posed the following question to the doctors, he only got evasive answers that were long winded. WHY? The question was... If a loop of wire was inserted in the cochlea of a little 5 year old child, what happens as the child grows, and the cochlea grows as well? Damage of the cochlea? (wire in place) More money for the doctors as the cochlear implant would need to be replaced with a longer loop of wire... Don't forget the cochlea has more than one function. It has the equally important function of BALANCE. I think I have said enough!!

An Audiologist speaks against CI

(BY HOLLY GEESLIN geeslin@iquest.net.)

I am an audiologist, married to a Deaf man, and we have two bilingual (American Sign Language and English) hearing children. I am certainly in the minority of my profession because I do not support the cochlear implant for children. I will try to explain why:

It is an invasive surgery which cannot be reversed (The implanted unit can be removed, but the "invasion" and any damage it caused cannot).

We do not know the long term side effects of these materials being implanted

in a child so young

in that area of the body

with those materials

Some significant limitations on activities (scuba diving, some contact sports, sky diving, etc) (These are acceptable risks and side effects for life saving surgeries but not for the implant surgery).

Too much time focused on TEACHING spoken English and none or not enough on language LEARNING (which cannot be taught)

Implants do not make a child hearing; they don't even make them hard of hearing. Children with implants are still Deaf (still need closed captioning, still need TTYs, still need flashing smoke alarms, still don't fluently comminicate in spoken English, etc.)

Extreme emotional investment by the family ("preimplant evaluation", etc) - - the family's evaluation of benefit of the implant (ie: is it working? should we continue using it?) is greatly biased by the great need for the implant performance to justify all the time and work and emotional roller coaster, particularly after being told the benefits "take time" and to "be patient"

Serious concerns about availability of the "unsuccessful" case studies - - I have difficulty trusting the data presented from my colleagues in audiology and the medical profession who will not talk to me, even in private, about recipients who do not use their implant. I believe there is a great deal of personal and professional need/desire for the implant to be "the cure." (look at Facilitated Communication for autistic children - similar phenomenon)

(this one relates to CI and oral approaches) You are asked to be full time teachers and tutors in addition to being parents. You are, by design, made to feel as if you have failed (as well as your child) if your child cannot hear spoken English.

(most importantly) Almost unanimously, our adult Deaf children are opposed to implants for children. We MUST listen to adult Deaf people; we can never learn by studying what they know from living. No excuse is acceptable for dismissing what they say.

I hope that anyone considering an implant will discuss their Deaf child's future with respected members of the Deaf Community in their area. If you can make it through these two books, it will be well worth your while: _Seeing Voices_ by Oliver Sacks and _ The Mask of Benevolence; Disabling the Deaf Community_ by Harlan Lane. There are lighter, easier to read books out there, but these two really get to the bottom line. Speak with someone who has such implants, ask them how is rehabilitations after this to hear and to speak? The "rehabilitation" consists of frequent long term visits for tune ups and "auditory training" Families and older children who have the implant I know describe this as tedious and difficult.

The following editorial was written by ROBERT POLLARD, Ph.D., psychologist at the University of Rochester Medical Center.

PSYCHOLOGICAL RISKS IN CHILDHOOD COCHLEAR IMPLANTATION

Cochlear implantation, is a controversial surgical technology being used to treat profound deafness in adults and children as young as age two. The "tail" end of the mouse-shaped implant is fed into the cochlea of the inner ear while the thin "body" end is secured in bone beneath the skin. Outside, a microphone worn behind the ear passes sound information to a computerized processor, usually worn at the hip, which in turn sends electrical signals to the implant. Postsurgically, most patients experience sound sensations but they are limited and distorted in nature, not like normal hearing. Many months are then spent in aural rehabilitation, learning to utilize the new sounds. Much of the criticism regarding cochlear implantation has arisen from the American Deaf community. Some focuses on how implants reinforce pathological views of deafness rather than views of Deaf life as independent, promising, and emotionally fulfilling. Other criticisms concern the child's autonomy and relate to the complex and sometimes painful history of deaf- hearing social dynamics (e.g., the oppression of sign languages). Hearing people sometimes find it difficult to appreciate these Deaf community views and the occasional vehemence with which they are expressed. Yet, beyond the socioculturally driven criticisms, there are other reasons for concern regarding childhood cochlear implantation, especially from a psychologist's perspective.

The central questions (and parental hopes) regarding the surgery's outcome are, broadly speaking, psychological: Will the child achieve more in school...be happier and more socially successful...form closer bonds with family members...have better self-esteem and mental health...find greater vocational options and success in adulthood? Unfortunately, the research which could provide answers to these critical questions (especially in contrast to less intrusive medical, educational, and psychosocial interventions) has not yet been conducted. Without such research, parents are left to presume or hope that the enhanced audition that usually follows implantation will eventually translate into a better education for their child, greater happiness or social success. The danger in making this leap of faith is that it incorrectly assumes that the implant, at worst, will be psychologically benign -- that it cannot lead to harmful educational or social-emotional consequences. Critics from the Deaf community note that the implant may impair a child's self-esteem, their body image, or the quality of the child's and family's acceptance of the hearing loss. These points are well taken. The device itself becomes an integral part of the child's body, something that sets them apart from others, including deaf peers. Implantation is a deeply personal event, one that the child must reinterpret at each stage of their social and sexual development. The risks are even greater when the implant does not result in substantial auditory benefit. While dramatic changes are never guaranteed, they are always hoped for. How will the child and the parents react to average or below average audiological outcome or one that does not translate into accelerated educational or psychosocial progress? Will they feel like a failure or that they have wasted the family's finances, time, and emotional resources? Will they drive themselves too hard during the long postsurgical rehabilitation phase, neglecting other aspects of the child's or the family's psychosocial development?

There are additional risks associated with how the implant may effect parents, siblings, and teachers. The family may become less devoted to signing or oral communication strategies because of the presence of the implant. In school, the child's need for communication and other support services may be less vigorously pursued. A child who could benefit from a sign language educational environment may have such a placement denied or unduly delayed while the effectiveness of the implant is slowly evaluated. The FDA has decided that cochlear implants are no longer experimental, even though these critical psychological outcomes and risks remain virtually unexplored. Anyone involved with this new technology should recognize this as a serious deficiency, as well as the reality that a leap of faith is being made with every implant -- not only in hopes for the procedure's psychosocial and educational value but in the assumption that it will otherwise be psychological benign. Until proper research is conducted, no such safety or benefits can be reliably assumed. In my view, when parents, medical personnel, and advocates of this technology fail to acknowledge and contemplate these risks, they are in violation of their legal and ethical responsibility to demonstrate fully informed consent before initiating a significant medical intervention for a minor.

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