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Cochlear Implants - Opinions

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Introduction

There are two separate issues:

  1. Implanting late-deafened adults, who decide for themselves.
  2. Implanting deaf children, according to decision made by their parents.

It is generally accepted that cochlear implants may improve the quality of life for late-deafened adults. Besides that, adults usually are empowered to make their own decisions according to their specific life circumstances. The main controversy is about implanting children, who cannot decide for themselves.

Rapid technological advances

(Contributed by Eric Smith [email protected] at 26 Sep 1995.)

Because of the rapid advances in CI technology over the past decade, it's important for all opinions in the FAQ to clearly state which CI technology those opinions are based on. For example, if a person had contact with CI users in 1985, and became disillusioned about CI's, and remains disillusioned today, without having had any further contact with other users, it's very important to take that into account when evaluating that person's opinion.

Implanting children is still very controversial, of course, for a lot of very good reasons. But, for a deafened adult, a CI now makes more sense than ever before. The main risk is that there might be some kind of subtle malfunction which might be hard to diagnose, and might result in years of frustration before it gets fixed. But even those who have subtle malfunctions tend to hear better with their malfunctioning CI than they heard with hearing aids.

Summary of opinions in favor of cochlear implants

  1. Accessibility to language at the critical age for language acquisition, assuming that the oral method is used.
    (John Campbell [email protected] is to be credited with the remark that the problem of accessibility exists only if the oral method is used.)
  2. The surgical procedure, while invasive, is not more invasive than routine operations such as tonsillectomy.
  3. According to limited experience so far, the procedure of implanting in children is simple and safe.
    References: Bill Peter's discussions with the following experts:
    • Dr. Stephen Epstein, MHC and NID
    • Dr. Barry Baron, San Francisco
    • Dr. Michael Morris, NIH
    • Dr. William Luxford, House Ear Institute
  4. Access to the world of education, social contacts, etc., as an hearing child.
  5. Possible avoidance of being labeled, teased, isolated, etc. as a 'disabled' person.
  6. Ability to be aware of sounds, like someone who was born hearing and later lost his hearing. There is anecdotal evidence that people with this ability later become excellent lipreaders.

(Information is up to date as of November 1993.)

Summary of opinions against cochlear implants

  1. Several implanted children derive little or no benefit from the implantation even after long auditory therapy, so they do not in fact gain enough access to language at the critical age for language acquisition using the oral method.
  2. Due to the length of therapy, some children, who might benefit from CI, may realize the benefit only after they passed the critical age for language acquisition using the oral method.
  3. Invasive surgical procedure, which has its risks.
    Possible risks include dizziness and very mild form of eczema.
  4. People who are implanted face risk from very strong magnetic fields (due either to pulling of magnetizable metals by the magnetic field or to induction currents from time-varying magnetic fields). Thus they cannot safely work at jobs which require working with very strong magnetic fields (such as practicing some fields of experimental physics).
  5. The MRI non-invasive medical examination method is dangerous to people with implants, due to its usage of very strong magnetic fields.
  6. The long-range Safety of the procedure in children was not conclusively established, especially the long-range effects, and in particular, the effect of the child's growth on positioning of the implant in the cochlea.
  7. Implanting a child may cause his parents and teachers to neglect more traditional (and successful) methods of deaf education, in the mistaken belief that the child can be considered to be "hearing".
  8. The implanted child is being 'married' for life to a group of medical experts who will monitor his cochlear implant operation and adjust his speech processor.
  9. The implanted child would have the non-healthy self-concept of having had something wrong with his body, which was (partially, because cochlear implants are not perfect substitute to normal hearing) fixed - rather than having the healthy self-concept of a proud Deaf.
  10. An implanted child is liable to being labeled or teased, due to his being special in having an implant in his ear and carrying a signal processor on his person.

(Information is up to date as of November 1993.)

Statements in favor of cochlear implants

It is possible to overcome several negative after-effects of cochlear implants by the following means:

  1. Sensitivity to various electrical and magnetic fields - by using non-ferrous materials in the implanted electrode, and by using the right kind of geometries.
  2. Psychological effects of implants - by ensuring that the implanted child and his family receive psychological counselling.
  3. Disappointment - by ensuring that one does not expect too much from the implant.
  4. Inability to benefit from the operation - by careful screening of candidates for cochlear implanting, and not implanting those who have very little chance of benefitting.
  5. Malfunctioning electrode - by explanting the electrode and re-implanting another electrode (it is possible!).
  6. Ensure that the people involved are well-informed and can give informed consent to the procedure. The people involved should be familiar with both sides of the situation.

[NEEDED: STATEMENTS BY EXPERTS IN FAVOR OF COCHLEAR IMPLANTS!!!]

Statements against cochlear implants

Opinions of C.C. Estes (from NAD) against CI

C.C. Estes (from NAD) 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.

NAD opposes CI

April 1993:

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:
Implanation 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 percpetion 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."

Procedural 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. 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) [email protected] at 5 Jan 1994.)

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 dispite 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 newpaper.. 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!

On the other hand...

(Contributed by Miriam Clifford [email protected] at 5 Jan 1994.)

I found Casey's suggestions about CI very interesting. Don't know if CI teams will ever refer anybody to their "failures" but certainly parents could and should seek out dissatisfied parents and users to see what they think. (For that matter, so should people about to become hearing aid users seek out a variety of opinions about aid use.)

I have one hesitation about Casey's post. If one talks to people who had implants 10 years ago, one is talking to someone with an obsolete implant. That's a little like asking the person who's hearing aid has been in the drawer for 10 years what he/she thinks of hearing aids. One does get information that should be fed into the system, but with caution. There have been changes over time in the devices. There are improvements all the time. So you need to be aware that you might be comparing apples and green peas. I guess the bottome line is that one needs to collect a lot of information from a lot of people and to evaluate it and think about it quite critically before making a decision.

CI is not cure-all

(Contributed by Alvean Jones [email protected] at 28 Jun 1994.)

If you are wondering about having cochlear implant surgery, please read on. If you are in a fighting mood about cochlear implants, as witness the recent postings to deaf-l, read on. (I may be perverse, but I love flames!)

This is a person's view of cochlear implants. Just that, A VIEW.

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 percieve 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!!

In a lighter vein, here is a cochlear implant joke. You probably have heard of it. If so, my apologies!!

Jack, who had a cochlear implant recently, went to a friends house for dinner. At the table, his friend suddenly got worried as Jack started to roll his head, slowly at first but with increasing speed. He was at it for a good ten minutes. Suddenly he stopped. His friend asked him what was that all about???? Jack replied: I left the box part of it in my jacket pocket and it is in the washing machine!!!!!

Audiologist speaks against CI

(Contributed by Holly Geeslin [email protected] at 22 Feb 1995.)

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:

  1. It is an invasive surgery which cannot be reversed (The implanted unit can be removed, but the "invasion" and any damage it caused cannot).
  2. 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
  3. 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).
  4. Too much time focused on TEACHING spoken English and none or not enough on language LEARNING (which cannot be taught)
  5. 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.)
  6. 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"
  7. 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)
  8. (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.
  9. (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.

Have someone such implants, 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.
Who was the youngest child such treated?
In the U.S., the 22 channel Nucleus implant has been approved by the Food and Drug Administration (FDA) for use with children age 2 and above.
Where can be found the cochlear implant centres with most experience to treat young (aged 3 years) children?
I would, instead, recommend contacting Deaf adults who use Sign Language, first. And listening carefully to what they tell you about the life of Deaf people in your country.

CI - not the first "cultural risk" to Deaf culture

About the comparison of implanting cochlear implants in deaf children and comparing this to the Nazi 'final solution' for the Jewish people (and by the way, also Aryan deaf and other disabled Aryan):

In a way, the Deaf culture has already undergone two decimations during the last few decades. As a result, the percentage of multi-defective (medically speaking) persons in the deaf population is higher than it was in the past.

The decimations were due to the following:

  1. Medicine advanced well enough to eliminate several cases of sickness-induced deafness (including ear infections and rubella(SP?) during pregnancy).
  2. Perfection of the hearing aids.

The first reduced the incidence of hearing impairments in the general population. The second severed the Hard of Hearing from the Deaf culture. Yet I saw no lamentings about those two developments in the DEAF-L postings. Now cochlear implants will reduce further (but not totally eliminate) the ranks of people whose only choice is the Deaf culture. But there are other relevant developments:

  1. Speech recognition is expected to be reasonably priced in few years, allowing also non-implantable deaf to have more contact with the hearing population.
  2. Sign language will re-merge with spoken language from which it was (probably) divorced in the last century due to inability to transmit gestures via the phone (why do you think Bell was so strong supporter for oralism? So that hearing people will be able to communicate using voice alone and hence use the phone! :-) ) - due to introduction and deployment of the videophone.

(You need only to look at Italians and Jews to realize that sometimes sign language and spoken language could have been merged.)

(Written by Omer Zak.)

Last update date: 
1996 Feb 3