WhyNotCI

Cochlear Implants: One Family's Decision for Their Deaf Child

By Kathleen Hoppe, April 1997

I am the parent of a child who is deaf. Parents of deaf children today are faced with many decisions. From the moment of diagnosis, there are hearing aids to be chosen and purchased and maintained; schooling choices to determine; and communication modes to be decided upon. In the past, these had included an oral only approach, signing, lip-reading, or a combination of those methods. For us in 1997, it also includes the decision about whether to get a cochlear implant for our child. In this document, I will assume the reader is already knowledgeable about a cochlear implant, what it is, and what benefits it claims in terms of giving a deaf child "hearing".

I wish, within these pages, to give the reader an explanation of why our family has made the decision to not get a C.I. for our son.

Studying the cochlear implant: Surgery, maintenance and long-term effects

According to an article in the Journal of the American Medical Association, "the age of onset continues to have important implications for success with cochlear implantation. Data on cochlear implantation suggested that children or adults with postlingual onset of deafness had better auditory performance than children or adults with prelingual or perilingual onset". Our son falls into the prelingually deafened category. That means that he lost his hearing before he had acquired any spoken language. Having heard no speech (at least after birth), the development of auditory and speech skills would be far more challenging for him than for a child deafened at a later age due to meningitis or other causes.

As with any surgery, there are risks associated with this cochlear implant surgery. General anesthetic exposure is a risk in all surgeries. Implant patients will incur the normal risks of surgery and general anesthesia. In addition, ear surgery may result in infection or bleeding, numbness or stiffness about the ear, injury to or stimulation of the facial nerve, taste disturbance, dizziness, increased tinnitus, neck pain and perilymph fluid leak. Inner ear fluid leak may result in meningitis. Implantation of the receiver/stimulator results in a palpable lump behind the ear. The presence of a foreign body under the skin may result in irritation, inflammation, or breakdown of the skin in the area around the receiver/stimulator and/or extrusion of the device. Such complications may require additional medical treatment, surgery, and/or removal of the device. Implantation of the device will result in complete loss of residual hearing in the implanted ear.

In 1993, the rate of major complications was down to about 5%. Those requiring revision surgery include flap problems, device migration or extrusion, and device failure. An uncommon and rarely permanent complication is facial palsy.

Thanks to better design, newer implants include self-test circuitry that allows objective device monitoring. Little kids are not the best at identifying when the device has failed, so this is a significant improvement. One point made by Ellen Rhoades (herself a cochlear implant user and auditory verbal therapist) is that recurrent ear infections are common with cochlear implants, and require aggressive treatment on the part of the child's doctor. If cochlear implants indeed mean a higher rate of infections, this would be an important consideration for parents. Anyone familiar with the facts of antibiotic use in our society knows that the overuse of these drugs leads to resistant bacterias. For our son, this is a real problem, as there are already a couple of antibiotics he is allergic to. This is an issue that I have had trouble finding documentation on, but it certainly warrants serious investigation by parents before choosing a cochlear implant for their child, and by pediatricians before promoting them.

Lifestyle changes

For an adult with a cochlear implant, there is a negative social impact that results from the frequent concerns about the maintenance or malfunction of the device. There are a number of situations to be avoided by those who have a cochlear implant. One of these is MRI (Magnetic Resonance Imaging), as the implant contains a magnet. There is no guarantee that the child would not need an MRI at some point in his or her future. For young children, this is a concern, as the MRI is increasingly used as a diagnostic tool that avoids unnecessary surgery. Implant manufacturers are working to make the internal part of the cochlear implant compatible with MRI's. Until that is done, and those with incompatible devices have them replaced (requiring a new surgery), this is a valuable tool that cannot be used.

A greater concern for us is the risk of damaging the device with electrostatic discharge. This can occur easily when a child goes down a plastic slide, or plays in a pit of plastic balls. "A discharge of static electricity can damage the electrical components of the cochlear implant system or corrupt the program in the speech processor. If static electricity is present (e.g., when putting on or removing clothes over the head or getting out of a vehicle), cochlear implant recipients should touch something conductive (e.g., metal door handle) before the cochlear implant system contacts any object or person. Prior to engaging in activities that create extreme electrostatic discharge, such as children playing on plastic slides, the speech processor and headset should be removed. Clinicians should use an anti-static shield on the computer monitor when programming a cochlear implant recipient." Carle Clinic warns that there is also risk to the implant from balloons (a VERY common toy!) and from VandeGraff machines, which are common in science classrooms and museums. Some may argue that the benefit of possible speech perception and use outweighs the disappointment in a child having to avoid these play situations. However, I find it ironic that in an attempt to make the child be more like the rest of the "hearing world" that the child must be identified as "different" on playgrounds and at birthday parties.

It is noted that the cochlear implant device can interfere with baby monitors: "Please be aware that because of radio frequency interference, the (Clarion) device interferes with the use of baby monitors. Please note that the opposite is not true. Baby monitors do not interfere with the transmission of information through your child's cochlear implant." This is another "small" inconvenience that makes one question what other devices may receive interference from the implant.

One device we know cochlear implants can interfere with is cellular (mobile) phones. "Some types of digital mobile telephones may interfere with the operation of the external equipment. As a result, cochlear implant recipients may perceive a distorted sound sensation when in close proximity (3-12 feet or 1-4 meters) to a digital mobile telephone in use." This could be a major inconvenience for users, and in our family vehicle would make hearing on the road difficult for our son, as we use a mobile phone. Even if we did not, many persons in cars we pass or stop next to will continue to use them.

Another issue is the necessity of carrying an identification card to prove that you are a cochlear implant user. "Devices such as airport metal detectors and commercial theft detection systems produce strong electromagnetic fields. Some cochlear implant recipients may experience a distorted sound sensation when passing through or near one of these devices. To avoid this, turn off the speech processor when in the vicinity of one of these devices. The materials used in the cochlear implant also may activate metal detection systems. For this reason, recipients should carry the Cochlear Implant Patient Identification Card with them at all times."

The device can also fail due to a strong blow. Just as you would not consistently hit your VCR, you would not want to give blows to your cochlear implant. This can be quite limiting in the typical little boy. Having raised five children prior to this one, I can tell you: kids hit their heads often! They fall down stairs, off bikes, on basketball courts. Boys especially love to wrestle and roll and sled and generally be physical. Again, we have a situation of trying to be made like others, but having to be different as a result. I do not hope that my son will want to play football, I'm not a contact sports fan. But I would hate to say, "no, you can't" because he may hurt his implant.

How long will the device last? What are the long-term effects? Which brings me to failure rates of the device itself. Even under the best of AV training, the device has to be operable in order for the person with the implant to hear. Currently, the typical warranty on the internal parts in 5-10 years. The speech processor and headset have a 3-year warranty that can be extended. While this will vary somewhat from one manufacturer to the next, it is important to realize that the internal components will not last forever. While ten years sounds like a long time, I look at my two year old son with a life expectancy of at least 70 years, and know that he will require at a minimum seven more surgeries in his life in order to have a working device. That's if he avoids plastics and is fortunate enough to not run into other technical difficulties that come to any mechanical device. An unknown future factor becomes looming here: if a child with a cochlear implant uses it successfully and is therefore dependent on it, what happens when it fails? There will be a time consideration for scheduling surgery for replacement. For adults who need the implant to function at work this is a big consideration. For adult women, who may be pregnant when the device fails, will they risk general anesthesia for a replacement? What if the adult is uninsured? The cost is significant, and certainly prohibitive to many. What if as the person ages they become dependent on medications for high blood pressure, heart disease, depression, or any other of a myriad of physical and mental problems-how will discontinuing those medications affect surgery?

While the changes taking place in the technology of cochlear implants is impressive, at least one company exhorts medical personnel to warn parents that:

In children, the removal of one cochlear implant for another is not recommended unless the patient does not receive adequate benefit from the present cochlear implant. The patient and/or guardian should be made aware of the probabilities of receiving more benefit from the new cochlear implant. Because long-term safety and effectiveness of cochlear implantation are unknown, contralateral implantation in children is not recommended. Long-term safety is unknown? And yet I am to consider the inconvenience of signing to be so great that I would make my child subject to that unknown? Time commitment to auditory training There is an extreme variability in the reports of improvements of speech perception and speech production in children following cochlear implants. According to Ellen Rhoades, approximately four years of auditory verbal training is required after the implantation. In her own words, it requires a great deal of "blood, sweat, & tears". The emphasis of her presentation was on the expectation of the child to hear. The family must expect it, and constantly reinforce the child as a hearing child. The child is discouraged from having associations with other deaf children, as they may "pick up deaf mannerisms". Sign language is not only discouraged, but seen as a tool that could bring about oral failure in the child. Imagine, if you will, that we have now implanted our son, and he is an almost three year old child. We are beginning the AV training, and we abide by all the recommendations. Our entire family implements the AV standards at home. Our son works very hard over the next four years to develop his hearing and speech. But in the end, he is still not able to be understood orally by most hearing people. Worse yet, his ability to understand others is inconsistent, and almost impossible in a crowded situation. This is the scenario for many, many children with cochlear implants.

Of course, it is likely that our son would be successful by the definition of the cochlear implant team. He would be able to identify words in an open-set test (not multiple choice) about 50% of the time. Maybe even more, as some kids scored as high as 84%. These tests, however, were not conducted in parks, restaurants, school lunch rooms, or shopping malls where much of life is lived. Still, I recognize that while the "hearing" my son would get from the cochlear implant would not help him around mobile phones, magnetic devices, while swimming, on a plastic play park, in an airport, around stores with theft devices, or other areas where he might be scanned magnetically, he could have one on one conversations in areas that are not too noisy or dangerous to his device. There are people who would find that very desirable, but they seem to be the post-lingually deafened adults who formerly heard and spoke. One such person who is an exception spoke in our town on the auditory-verbal (formally known as "oral only") approach. She was born with a profound hearing loss.

During Ms. Ellen Rhoades presentation, she held herself up as a model of a hearing deaf person. Yet I noted that when I asked a question of her from my microphone some distance from the stage, she relied on the captioning being typed on stage. I am sure that face to face this obviously bright and determined woman does an excellent job with her speech perception. But in this classroom environment, she was much less impressive. The film we were shown of a darling little girl in the years after her cochlear implant was indeed inspiring. It seemed a miracle-this deaf child could now hear and speak. Missing from this clip, however, was footage of this little girl at the mall, in the classroom, and at church-all situations with lots of background noise. How did she do in those situations? Also missing were hard statistics on other children's stories. I have no doubt that we were shown the best success story, when we know that not everyone attains this level of success.

A strong emphasis was placed on the parent's responsibility to bring about success. "Deaf Kids Can Hear!" was the title of the talk given that night. However, this is not an accurate or honest presentation. According to a manufacturer of cochlear implant devices, "cochlear implants do not restore normal hearing and benefits vary from one individual to another." When, at the end of the presentation, I asked a question about technical failure rates, the answer was vague and pushed off until the next presentation. But as I spoke with others after the close, the impression was given that the failures in AV training were because the parents "didn't want the child to hear badly enough". I find this to be frightening. If after four years of intensive training, the child still is less than stellar in their open-set testing, the blame is placed on the family, or worse yet, on the child for not wanting it badly enough. I picture us devoting four years to our son's auditory verbal training, expecting him to hear and to speak. We do not sign, gesture, read lips, or use any tool but his hearing and speech for communication. At the end of the four years, he is unable to consistently understand what is said to him, or to make his needs known to us or others. And now we see ourselves as failures, and our son as one also. What message do we project at that point? Do we continue to affirm him as a hearing person, or do we now re-identify him as deaf? If he is unable to socially succeed with hearing children, will deaf children now accept him? Since we gave up signing for four years and relied only on aural input, how is his language development at this point in time? Four of his young, formative years that could have been enriched with American Sign Language, or even with pidgin signed English, have instead been spent attempting to "fix" him. Those years, in which his brain longed for communication that could have been easily met, are never to be recovered. Now we have failed in AVT method, and we have failed in giving our son a rich language base from which he learns more about the world. That is a weighty failure indeed.

Psychological aspect I think I've already covered some of my psychological concerns with cochlear implants. One thing I have done is attend as many varied programs related to deafness as possible. I have met many deaf adults at this point. Some grew up in the era or "oral training" when they were discouraged (some were even punished) for using sign. Granted, the cochlear implant gives more sound than simply hearing aids in most deaf people. But the message given is the same: "This is a hearing world. You must hear to be accepted." Over and over again, I heard of the despair felt by deaf people who perceived themselves as failures, because they could not produce the speech and understanding of speech that their parents and educators desired for them. Only one man I met seemed satisfied with his status as an "oral" adult, and even he admitted that it had been a very difficult road. He had learned sign language as an adult and found it helpful in many situations. On the other hand, I met, and now count as friends, many deaf adults who use sign language. Contrary to some opinions, this is a rich, distinctive language. It is not merely gestures or pantomime. These deaf people who use ASL are people just like me-they work, raise their children, laugh, argue, discuss politics, play sports, and in general have rich lives. They just happen to use a different language than most of us do!

My greatest regret is that our son's hearing loss was not identified until he was eighteen months old. For a year and a half, he lacked language input that signing would have provided. There is no question that being among a small minority who use this language poses disadvantages. But the major advantage for us as parents is that by learning this language, there is nothing we will not be able to discuss with our son. Our faith and morals, our family traditions and stories, our jokes and insults. All the things that make one part of a family. We will not spend years agonizing over whether he will be successful as a hearing person. We know that with sign language, he will be a happy person. I would be lying if I said there is not a certain sadness about the limited conversation he will have with some people. There are many members of our own extended family that will never learn to sign. But there will be an extended community of people who DO sign. Do I consider this limiting? Yes and no. Yes, it is obvious that there are a limited number of people who are fluent in sign language. There are also a limited number who share our religious faith. And just as I have no problem "limiting" my kids' exposure to families with similar religious beliefs, I have no problem with my deaf son being drawn to others who share his language. I believe that because he is getting language now, as a small child, that his brain will be ready to learn the written language of English, and any other language he desires to learn. He will be able to communicate with anyone who can read and write.

Message given to our son It really is my hope that the message we will give to our son is this:

"Son, we love you. When you were a small child, we found out that you were deaf. At first, we felt very sad. We thought of the things you weren't hearing, our words of love for you, music, birds, crickets. But most of all, we felt sad that for the first year and a half of your life, we hadn't communicated to you as much as we could. We began signing to you that very day, and were extremely happy when you started signing back. In the midst of this excitement at finding a common language, some people began encouraging us to get a cochlear implant for you. We even made an appointment with a hospital that could do this. But as we studied the issue more, we saw that there were risks and unknowns in this dependence on an as yet perfected device. We realized that if we tried to "fix" you, you would always think that we considered your deafness burdensome. We wish you had been able to hear, but you don't. And we love you just as much! We want you to know how special you are, and that God makes good of all things for those who love Him. Because of you, and learning your language with you, we have made many new friends we would never have known otherwise. We have learned to think about your life and our own in a bigger picture, putting aside instant gratification. We hope that when you are a man, you won't be angry that we did not give you a cochlear implant that MAY have given you the ability to understand speech in SOME situations. We hope that you will be happy, with many friends, and with a great knowledge of our faith. Most of all, we hope that you will know, we love you forever with no strings (or devices!) attached."

Message to other parents: In rereading this document, I realize that it would be upsetting to me if I was a supporter of cochlear implants in children. While it is certainly my intent to encourage other parents of deaf children who have not made a decision on this matter to see a particular side to the debate, I do not wish to criticize parents who chose cochlear implants. Your children, and my child, are valuable people, all of whom deserve the best education available to them. I believe that ultimately these big decisions about our kids belong to us, the parents. I also believe that we should only make those decisions with our eyes wide open.

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