My son, now age 7 is a special needs child, he is profoundly deaf and about to undergo an invasive surgical procedure known as cochlear implantation. One that is not necessary and more importantly our adult deaf who were implanted as children are almost unanimously opposed implants for children. Cochlear implantation, is a controversial surgical technology being used to treat profound deafness in adults and children as young as age 18 months. 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 typical 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 might follow 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. At this junction I will present several issues that need to be addressed in order to understand the gravity of the situation. First and foremost It is an invasive surgery which cannot be reversed (The implanted unit can be removed, but the "invasion" and any damage it caused cannot). 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.
The procedural errors become apparent, when we take notice of the FDA’s failure to obtain formal input from organizations of deaf Americans. Also from deaf leaders, as well as scholars knowledgeable about the acquisition and use of sign communication and English in deaf children. Also the social organization and culture of the American Deaf Community. 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. The Scientific errors also make themselves apparent when we take note that 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 congenially 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. The environmental and practical living issues are;
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 the procedure, may realize the benefit only after the passed the critical age for language acquisition using the oral method.
3) The long-range safety of the procedure in children was not conclusively established. Especially the long range affects, and in particularly, the effect of the child’s growth on positioning of the implant in the cochlea.
4) Implanting a child tends to cause both parents and teachers to neglect more traditional (and successful) methods of deaf education, in the mistaken belief that the child can be considered “hearing”.
5) The implanted child would have a non-healthy self concept of having had something wrong with his body, which was (partially, because cochlear implants are not perfect substitutes to normal hearing) fixed. Rather than having the healthy self-concept of a proud healthy member of the deaf community.
6) 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.
7) We still don’t know the long-term effects of implants, i.e. 30-50 years. Implants may cause bone growth and scarring inside the cochlea.
8) If and when the stimulator (the internal part of the device) fails or is damaged, then another surgery will be mandated. Each successive surgery carries the additional risk of the electrodes not working as well as before.
9) Static: Radar detectors, Playgrounds (i.e. Slides build up static charges in them), Trampolines, computers, neon lights produce loud buzzing sounds that interfere with speech signal, and carpeting.
10) Pressure: High altitudes, swimming, skydiving, certain career fields
11) Magnetic fields: People who are implanted face risk from strong magnetic fields. Due to either the pulling of magnetizable metals by the magnetic field or to induction currents from time-varying magnetic fields. The following must be held with great concern. A MRI is a non-invasive medical examination that is very popular especially for head trauma patients. It is also a method that is dangerous to people with implants because of its usage of strong magnetic fields. As well the implantee is more limited because certain career fields cannot be pursued.
12) Trauma: accidents that commonly occur to children as they are growing and learning become detrimental to an implantee as well as more physical or high impact sports are no longer allowed.
13) Infection, Vertigo, Tinnitus, facial and/or nerve paralysis, competency of surgeon, Programming issues, lack of control of device (i.e. Once a manufacturer’s device is implanted, the implantee has no option but to remain with that device for life unable to "upgrade" with better technology).
14) The implantee is being ‘married’ for life to a group of medical personnel when well monitor the implant operation and make adjustments to the speech processor.
15) There is far less control over the prosthetic device, i.e. once a manufacturer’s device is implanted. The implantee has no option but to remain with that device for life unless the device fails of the implantee elects to pay out of pocket for another surgery or device.
16) If and when the device fails, the implantee may go through a prolonged period of emotional anguish doe to not hearing/understanding. At least until there is another surgery, and then after re-implantation another month of silence between time of surgery and initial stimulation.
17) Low frequency consonant discrimination for placement cues may be more difficult.
18) An implanted child is more apt to being labeled or teased, due to the implant in their ear and the processor on their person.
19) There is no evidence of enhanced speech perception
20) There is no evidence of enhanced language acquisition
21) There is no evidence that the child will enjoy greater educational success. In fact evidence points to a diminished educational success due to the amount of time spent on oral communication and the lack of focus on written or comprehension.
22) There is evidence that in profoundly deaf children, conventional amplification enhances speech perception better than the implant.
23) The surgery makes a lifetime commitment for the child
24) Competency of surgeon i.e. leaders in the field of cochlear technology WILL NOT even consider a child over the age of 5 years for implantation. This lends question to the motivations of the surgeons willing to go against the experts own conclusions, and questions their merit
25) Mapping sessions are very time consuming, and boring for the child, which in turn makes the session even more difficult, and time consuming.
26) The implant should be re-programmed annually. (more often for young children)
27) Programming is not easy, especially for establishing the proper comfort levels
28) Changing from one program to another oftentimes involves a setback in the implantee’s discrimination.
29) Adapting to any change in strategies is difficult
30) As the child moves into their teen and adult years the implant can interfere in the romance department.
31) Processor battery gives no warning that it will go dead and may place the implantee in a very uncomfortable situation, by suddenly not being able to hear while in the middle of a conversation (although there is the option of having a warning that is audible to everyone within earshot available. This tents to not be a viable choice with most teens and adults)
32) Batteries have a dramatically shorter life span than do hearing aids. This can be both inconvenient as well as more expensive.
33) Residual hearing is typically destroyed upon implantation
34) Decisions are made by families wishing the child to be “normal”
35) The child may turn out to be neither culturally deaf nor culturally hearing. To deprive anyone their culture is a heinous crime against that person and their birthright.
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 their 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."
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