Cochlears for Kids: A look at the technology and choice behind cochlear implants for children Abstract: Cochlear implants first appeared in the 1980s, and their three-decade journey is filled with advances, new insights, and controversy. Cochlear implants are devices for those with profound hearing loss. They convert sound waves into electrical impulses the brain interprets as sound despite damaged portions of the inner ear. The surgery to implant the device is simple but expensive; the most important and complex part of the process is actually the post-surgery language training. The time it takes to associate sounds with meanings leads to an emphasis on performing the implantation on children before age two. Cochlear implants, therefore, are often the result of parental decisions, which creates a bitter controversy between the Deaf World and those who advocate for the technology. Our interview with a surgeon who performs the implant procedure and someone who grew up with the implant provides insights into the decision process. Laura Patch Jaclyn Wallenmeyer, Qinxin Luo Farhad Mohammad Tehrani CCT 506 Fundamentals of Technology Profs. Ribes and Barba T.A. Cassidy Smith Cochlears for Kids 2 Introduction Cochlears for Kids examines the technology and context behind pediatric cochlear implants (CIs). These devices work by circumventing damaged areas of the natural hearing system and permit individuals who are deaf to perceive sounds. They send electrical currents or impulses to the brain, which interprets them as sound. Approved in 1985, improvements to the technology since have increased oral communication. Once single-channel devices, the current multi-channel models allow sound differentiation with regards to frequency and pitch. Experts recommend CIs for young children so they can develop language at rates similar to naturalhearing individuals. We researched CIs in three steps. In the first step we read guides written by health institutions and manufacturers to learn how the device works and future improvements. Second, we examined academic articles about the ethics of CIs and the controversies surrounding them. Last, we conducted an interview with an expert and a user. We spoke with Dr. Mark Dettelbach, a pediatric specialist, from the Feldman ENT Group. We also interviewed Ethan Young, who received a CI at age 3, and he explained his experience with the device. This paper examines how CIs work, post-surgery requirements, the controversies around CIs, and areas for future development and research. First, we explain natural hearing, since CIs act both within that system and circumvents it, and then we describe the technology of CIs and its various components. Second, we discuss the post-operation care. Individuals must undergo therapy to understand sounds. Third, this paper discusses the conflict between the Deaf World and advocates of CIs. The Deaf community is very resistant to CIs because they treat hearing loss as a “problem” that needs to be fixed and diminish the Deaf World culture. Last, we look at future developments and areas for further research. Cochlears for Kids 3 CIs: How do people hear? CIs are electronic devices that allow deaf or severely hard-of-hearing individuals* to have a sense of sound. This small device is a complex mixture of external portions and pieces that are surgically place under the skin and in the ear canal. These implants work differently from hearing aids in that instead of amplifying sound, they bypass damaged portions of ears to directly stimulate the auditory nerve.1 Natural hearing is a system in which sound waves are converted into electrical impulses the brain interprets,2 and it requires several parts of the ear. Sound waves travel down the ear canal to strike the eardrum, which causes the eardrum to vibrate. Behind the eardrum are three small bones called ossicles.3 These connect the eardrum to the inner ear, or cochlea. When the eardrum vibrates, these bones begin to vibrate, creating movement of fluid in the cochlea. These liquid waves cause the tiny hair cells inside the cochlea to move. The hair cells absorb the movement and convert vibrations into electrical impulses, which are sent to the auditory cortex. This portion of the brain interprets the impulses as sound.4 A CI circumvents this system by directly stimulating auditory nerves. The device has two parts; an external system and an internal implant. The external system includes a microphone, a sound processor, and a transmitter.5 The implant includes a receiver and an electrode system.6 The speech processor uses one or two small microphones to pick up sounds. The speech processor and microphone are typically worn around the ear, similar to a typical hearing aid.7 Processors were originally small box units worn in jacket pockets, but the ability to make computer chips smaller allows the speech processor to now be in the same unit as the microphone and worn behind the ear.8 It turns sounds, which enter the microphone, into digital * An individual is considered deaf if the hearing loss is 80 db or more, and severely hard of hearing if the hearing loss is in the range from 60-20db ("Understanding Severe-to-Profound Hearing Loss." Beltone. Beltone, 2013. Web. 19 Apr. 2013.) Cochlears for Kids 4 signals and sends them to the transmitter, which then sends the signals through the skin to the receiver. The receiver is a disk item surgically inserted behind the individual’s ear. During surgery, the skin is opened and a portion of the skull is shaved, creating a well, not a hole in which the disk lies flat once the skin is stitched closed. The receiver converts the signals into electrical currents that travel along the electrode array. The electrode array is usually a wire, which connects the receiver directly to the auditory nerve, by going through the cochlea and bypassing the damaged hair cells.9 To place the electrode array, surgeons drill through the mastoid bone encasing the cochlea.10 These electrical currents stimulate nerve fibers in the cochlea and, as with natural hearing, the brain recognizes these signals as sound. When the technology was first implemented, the malfunctions occurred with the electrode array as it could dislodge.11 If the wire becomes unattached, signals no longer reach the nerve fibers, rendering the entire system useless. They now use a longer wire, which practically eliminates this problem.12 The most complicated portion of CIs is the external element. This outside portion, as already mentioned, consists of the transmitter, microphone, and a speech processor. The transmitter is basically a coil encased in plastic, with a magnet on one side (the side that faces towards an individual’s head). The magnet keeps the transmitter in place as it attracts the metal receiver. Attached to this transmitter is a wire connected to the behind-the-ear (BTE) component. The BTE houses the speech processor, microphone, batteries, ear hook, and volume control. It runs on rechargeable batteries the user can easily access by dissembling the piece. It also includes a filter, which must be routinely cleaned or the transmitted sounds begin to distort with static noise.13 On newer models, there may also be a digital display offering setting information. A requirement of post surgery is selecting these settings, discussed later in this paper. For Cochlears for Kids 5 children, experts freeze these settings so children cannot change their implants by accident and alter how the devices convey sound between visits to their doctors. You can think of these locks as childproof medicine caps that prevent children from accessing programming. The speech processor and its programming are essential because they convert sound into electrical impulses. The microphone sends sound in the form of electricity, and the processor codes the electricity into signals the brain recognizes.14 It uses a process of analog-to-digitalconversion, similar to converting an old-fashion record into the digital music files we use on iPods. Sound waves are continuous waves that alter based on the pitch or frequency. The sound processor takes samples of the incoming waves and codes them based on pitch/frequency and loudness. Since this conversion process requires compression, individuals who rely on CIs do not receive the same data they would if hearing naturally. This method is why doctors say the technology does not “cure” or “restore” hearing.15 CIs do not offer individuals a chance to have super sonic hearing, or even hearing equal to natural hearing. The microphone especially has difficulty picking up relevant sounds and filtering unnecessary noises in crowded places, which natural hearing can. The speech processor, however, can communicate some differences in sound. “Variations in the power and tempo of the electrical signals convey various sounds by triggering different patterns of impulses in the hearing nerve.”16 Sound itself has two characteristics that play a role in the conversion process, pitch/frequency and loudness.17 In current CIs, pitch or frequency is conveyed through a channel system. Channels are simulation sites created in the cochlea by the electrode array.18 The processor splits signals and sends them to different channels based on pitch and frequency.19 The more channels a device has, the more likely the signal created by a CI will resemble natural hearing. The processor communicates loudness through strength, or size, in the transmitted signal.20 Cochlears for Kids 6 While CIs do not cure deafness, they do allow people to perceive sounds. They give individuals information about the environment and help them understand speech.21 Individuals with the device increase their ability to communicate with others. Most experts “agree that cochlear implants do not restore completely normal sensory information, but they do provide important cues for speech perception.”22 CIs, in many cases, make it easier to function in mainstream society. However, a CI does not guarantee people the ability to hear and speak at natural levels. The amount of perceptible sounds can change on a case-to-case basis. A concern with this technology is that it requires surgery. The surgery, however, is relatively low-risk. Dr. Dettelbach explained, “the surgeon actually has the smallest role in the whole process of cochlear implantation.”23 The surgery is frequently performed on an outpatient basis for adults. Doctors may keep children overnight to ensure their safety. A few patients may experience dizziness afterwards as a result of the stimulation of their ear, but infection is very rare.24 The total cost is very expensive. It can easily cost over $50,000. Recently insurance companies began covering this cost, but not all do.25 There are many individuals who cannot afford to get a CI, and the cost is a huge factor in why many do not receive bilateral CIs.† Context: After implantation Since CIs digitize sound, individuals must learn or relearn language. The difference between natural sounds and sounds transmitted through a CI varies enough that sounds must be re-associated with their meanings. The key to success with CIs is working with audiologists and speech pathologists for extensive periods.26 After a healing period of 4-6 weeks, individuals are fitted for the external portions, and hear using the device for the first time.27 Individuals will not † Bilateral cochlear implants are CIs in both ears. Studies show that bilateral implantation greatly increases an individual’s ability to develop language. However, many insurance companies have strict requirements a patient must meet before she/he receives approval for a second CI. These conditions include demonstrated benefits of the first CI, meaning that most individuals cannot receive two CIs at the same time, which would cost less than two separate surgeries. Cochlears for Kids 7 be able to understand speech immediately, and thus therapy is required. At the time of activation, audiologists and the recipient work together to adjust the speech processor’s programming. This practice is called mapping and entails adjusting the volume levels and sensitivity of stimulation spots.28 Basically, mapping is the method through which channels are set for optimized hearing, or perception of sound. As an individual’s skills using the implant develop, the mapping needs adjustment, so frequent check-ups are necessary at the beginning and can taper to annual ones later.29 In addition to mapping, recipients require speech therapy to develop language. Adults can receive CIs and regain language understanding, but the older an adult is, the harder it may be to learn as brains are fully developed. Children relearning, or learning for the first time, how certain sounds associate to different people and situations typically find the process easier than adults as their brains still have elasticity.30 Thus, CIs are highly recommended for young children. In fact, with the introduction of neonatal hearing screening in the 1990ss, implantation increased dramatically.31 Furthermore, deafness at a young age dramatically effects a child’s development of language. 1.2 to 1.7 children in every 1,000 live births are born with hearing loss, and 20-30% of those have profound hearing loss.32 The number of children who are deaf “increases up to 6 years of age as a result of meningitis, the delayed onset of genetic hearing loss, or late diagnosis.” Studies show that children who are deaf by age 3 fall significantly behind hearing children in ability to master language, whether written, read, spoken, or signed forms, and this trend is regardless of whether the child uses oral communication (excludes signs) or total communication.33 By high school graduation, the median reading level of children who have been deaf since a young age is below the level of natural-hearing third graders.34 CIs will not fix this gap. Deaf children still learn language at slower rates than their natural-hearing peers Cochlears for Kids 8 because there was a delay in their learning. However, when compared to children that do not receive the implant, children with CIs acquire language skills at faster rates, with a mean rate closer to that of natural-hearing children.35 If a child receives the technology after age 7, a more noticeable gap in language acquisition will occur.36 However, if a child born with profound hearing loss receives the implant before age two, she or he will enter first grade with receptive and expressive language skills close to their natural-hearing peers.37 Context: Tensions between the Deaf and Hearing Worlds The largest controversy about the technology does not concern the expensive surgery, although that certainly is a barrier, but arises from tensions between those who want the implant and the Deaf World.‡ “Perspectives on implants vary according to whether one adopts a ‘medical/disability’ or a ‘social/cultural’ model of deafness.”38 The Deaf World does not see themselves as handicapped. They view the strong advocacy for CIs within medical and press circles as belittling of their “linguistic and cultural values.”39 Advocates of the Deaf World object to pediatric CIs on two levels. The first is that they believe CIs do not increase perception skills by children enough to be worthwhile. As the technology offers sensory information, the benefit to oral language can be small. The second is that it is unethical for parents make the choice for children. The choice to receive pediatric CIs is often made by parents “who have not before been familiar with deafness and the possible lives of deaf people.”40 Some in the Deaf World see this choice essentially as “genocide,” resulting in dwindling numbers of children who would be part of the Deaf World.41 When choosing to have their child receive an implant, parents should consider that they are denying their child full entry to the Deaf World. It can place a child in the awkward position of not belonging to either the hearing community or the deaf one. ‡ The Deaf World refers to a community comprised of members and advocates of a linguistic and cultural minority in the United States that uses sign language as their primary language. Cochlears for Kids 9 The Future As technology around microelectronics advances, so do the possibilities for CIs. One of the newest models of the external pieces is waterproof. Older models require individuals to remove external portions during showers or swimming, leaving the individual completely deaf during these activities.42 Cochlear Nucleus created a model on which a blue tooth device can connect directly to the BTE element so individuals answer phones through their CI.43 Since transmitting through skin is the most difficult portion of the process, manufacturers are working on ways to reduce this weakness. One corporation just trademarked a device that anchors into bone. It is basically a screw partially inside and partially outside the skull. The speech processor would screw into it, eliminating the need to pass signals through skin.44 The problem with new models is that they must work with old receivers.45 Since there are always inherent risks in surgeries, it is impractical to change receivers every time people choose a new external model. Companies, therefore, must consider the programming of old receivers when developing new speech processors. In addition to new developments in models, there further research is needed. Acknowledged benefits of CIs result from the current sample of individuals with CIs. However, in the US “there are substantial differences in rates of implantation among groups of children who are potential implantees on the basis of race, presence of an additional disability, and socioeconomic status (SES).”46 The rate of implantation for White and Asian American children is five times higher than those of Hispanic or African American background.47 Since implantation is costly, and insurance companies did not originally cover the surgery and therapy, individuals who received them in the 1980s and 1990s tended to be from high-income families. Cochlears for Kids 10 This discrepancy means that individuals may have access to better resources post surgery, increasing the likelihood that language develops. Further research should focus on how efficient CIs are in children who are unable to access these resources. Components Interviews: Our main interview was with Dr. Dettelbach from the Feldman Group of ENT. Dr. Dettelbach performs the implantation surgeries. He was able to offer insights on the surgery and the benefits to hearing. Additionally, we interviewed Ethan Young as a user of the technology. Ethan, a college student, received a CI at age 3. He shared his experience of growing up with one and the amount of care it takes for the device to work efficiently. Survey: Many of our academic sources mention that parents make the choice to get a CI for their child without fully understanding the device or knowing about the resources available in the Deaf World. However, our research comes from the perspectives of doctors and other experts. We, therefore, designed two surveys to gather information directly from parents. For more information about our surveys, see the Appendix. Poster: Our poster aims to explain the different components of the technology, introduce the Deaf World controversy, and explain required steps post implantation. The poster provides visuals to connect the portions of the device with their location and separate the external elements from the internal ones. Consequently, our main image is that of a head, opened to the inside so one can see the internal portions. The poster relies heavily on our color scheme to make the poster child-friendly. While we mainly target parents, we also want children to feel interested. Furthermore, we created a postcard and brochure to accompany the poster. The postcard is mostly to define what the technology is, whereas the brochure offers succinct, but detailed information about CIs, covering all aspects of our research. Cochlears for Kids 11 Video: Our video offers a summary of the findings of our research. Using clips from our interviews with Dr. Dettelbach and Ethan, we explain how the technology works and the process that occurs afterwards. Dr. Dettelbach explains that the surgery is the simplest portion of receiving a CI. The learning process afterwards requires more attention. Ethan discusses life with an implant, including how to care for the external portion. The video offers visual depictions of the technology so watchers can better understand the pieces. Website: Our website conveys information both about the technology and the controversy. We oriented the project to communicate information to parents with young children. Additionally, we wanted the site to be friendly for young children that have CIs in case they want to learn more about the technology. We include the academic information we learned, but use language and visuals parents without much understanding of hearing or technology can understand. We also added a “Kid’s Page” specifically for children. Conclusion Pediatric CIs do offer benefits for deaf children, but there are also downsides. Frequently, parents make the choice for their child without having all of the information or fully understanding the technology. Since doctors are strong advocates of the technology, hearing parents of deaf children may not understand the other choices available to them. Additionally, parents feel that their children can have their hearing fully restored, not realizing that CIs offer limited perception of sound. It is important that information delivered to parents contain both explanations of the technology, and the Deaf World options for their child. 1 "Cochlear Implantss." National Institute on Deafness and Other Communication Disorders. National Institute of Health, Mar. 2011. Web. 18 Mar. 2013. 2 Dettelbach, Mark. "Dr. Dettelbach." Personal interview. 5 Apr. 2013. 3 "Auditory System." Wikipedia. Wikimedia Foundation, 15 Apr. 2013. Web. 19 Apr. 2013. 4 "The Ear: Auditory and Vestibular Systems." Partners in Assistive Technology Training and Services. N.p., July 2001. Web. 18 Mar. 2013. Cochlears for Kids 12 5 "How Does a Cochlear Implant Work?" Cochlear Implant Online. Cochlear Implant Online, 2012. Web. 19 Mar. 2013. 6 "What Is a Cochlear Implant?" Medical Devices. FDA, 8 Sept. 2010. Web. 19 Mar. 2013. 7 "Cochlear Implants." ASHA.org. American Speech-Language-Hearing Association, 2013. Web. 19 Mar. 2013. 8 Wilson, Blake S. "Engineering Designs of Cochlear Implants." Cochlear Implants: Auditory Prostheses and Electric Hearing. New York: Springer-Verlag, 2004. N. pag. Google Books. Google. Web. 19 Apr. 2013. 9 "Animation: Normal Ear, Ear with Hearing Loss, and COCHLEAR IMPLANT Procedure."Medical Devices. FDA, 23 Sept. 2011. Web. 19 Mar. 2013. 10 "Inside a Cochlear Implant Surgery." Cochlear Implant Online. COCHLEAR IMPLANT Online, 8 Apr. 2008. Web. 19 Mar. 2013. 11 Dettelbach 12 Dettelbach 13 Young, Ethan. "Interview with a COCHLEAR IMPLANT recipent." Personal interview. 13 Apr. 2013. 14 "Speech Processing Strategies." BCIG.org. British COCHLEAR IMPLANT Group, n.d. Web. 21 Apr. 2013. 15 Asha 16 "Cochlear Implant Information." Johns Hopkins Medicine. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System, n.d. Web. 21 Apr. 2013. 17 Speech Processing Strategies 18 "Single Channel versus Multi-Channel Cochlear Implants." HealthyHearing.com. Healthy Hearing, n.d. Web. 21 Apr. 2013. 19 Speech Processing Strategies 20 Speech Processing Strategies 21 "COCHLEAR IMPLANTs." ASHA.org. 22 Svirsky, Mario A., Amy M. Robbins, Karen Iler Kirk, David B. Pisoni, and Richard T. Miyamoto. "Language Development in Profoundly Deaf Children with Cochlear Implants." Psychological Science 11.2 (2000): 154. 23 Dettelbach 24 Dettelbach 25 Dettelbach 26 Dettelbach 27 COCHLEAR IMPLANT Information 28 COCHLEAR IMPLANT Information 29 ASHA 30 Sharma, Anu, Michael F. Dorman, and Anthony J. Spahr. "A Sensitive Period for the Development of the Central Auditory System in Children with Cochlear Implants: Implications for Age of Implantation." Ear and Hearing 23.6 (2002): 532-39. 31 Hyde, Merv, and Des Power. "Some Ethical Dimensions of cochlear implantation for Deaf Children and Their Families." Journal of Deaf Studies and Deaf EducationWinter 11.1 (2006): 102-111. 32 Kral, Andrej, and Gerard M. O'Donoghue. "Profound Deafness in Childhood." New England Journal of Medicine 363.15 (2010): 1438. 33 Svirsky 153. 34 Svirsky 153. 35 Svirsky 155. 36 Sharma 37 Kral 1438. 38 Hyde 102. 39 Hyde 40 Hyde 1-3. 41 Svirsky 154. 42 Young 43 "Using Bluetooth with Your Sound Processor." YouTube. Cochlear Nucleus, 11 Apr. 2011. Web. 21 Apr. 2013. Cochlears for Kids 13 44 Hewitt, John. "Upgrade Your Ears: Elective Auditory Implants Give You Cyborg Hearing." ExtremeTech. Ziff Davis, Inc., n.d. Web. 21 Apr. 2013. 45 Young 46 Hyde 103. 47 Hyde 103.