- The Washington Times - Sunday, January 28, 2001

Rachel Knobel of Columbia, Md., can tap out a tune on the piano. She giggles when her brother tells her a joke, and she can sing along with her kindergarten class.

Rachel was born with profound hearing loss. She received a cochlear implant when she was 18 months old. Instead of living in a silent world, Rachel inhabits one full of the same sounds that surround other 5-year-olds.

"The cochlear implant gives back something that was taken away," says Rachel's mother, Julie Steinberg. "Is it a cure that fixes the problem forever? No. But she hears with the implant."

A cochlear implant is a small electronic device that transmits signals to stimulate the auditory nerve. The auditory nerve sends signals to the brain, where they are interpreted as sound.

Hearing loss which can be caused by genetics, disease, aging or injury commonly is due to damage to tiny cochlear hair cells in the inner ear. It is the movement of the hair cells that sends an electrical current to the hearing nerve. The nerve sends a current to the brain, where the stimulation is recognized as sound.

A hearing aid amplifies sound, but a cochlear implant compensates for the damaged parts of the ear. The device includes a quarter-size receiver that is implanted surgically behind one ear, with an electrode connected in the fluid of the cochlea of the inner ear. A small headpiece worn behind the ear contains a microphone and a transmitter that sends sound through the system. A Walkman-size speech processor, which converts sound into a special signal sent to the implanted receiver, is worn on the body.

About 36,000 Americans have received cochlear implants since the devices were approved by the U.S. Food and Drug Administration in the mid-1980s, says Peg Williams, executive director of the nonprofit Cochlear Implant Association.

Rachel, who must unplug the processor at night and in the bathtub, is an example of how implant-ing the very young can lead to great strides in communication, says Dr. John Niparko, director of otology and neurotology at Johns Hopkins University Medical Center.

Implanting children before age 2 offers a huge advantage for the patients' ability to understand and use speech, Dr. Niparko says.

"A good candidate for the surgery is a very young child whose brain and auditory pathway are still amenable to input," says Dr. Niparko, who has performed more than 700 implant surgeries.

Another good candidate is an adult who formerly had hearing, he says.

Despite the success of the implants in young patients such as Rachel Knobel, there are those who are opposed to the devices.

They say parents hastily seek a cochlear implant as an across-the-board cure, which it is not in all cases. The success of the device depends on many issues, including how long a user has been deaf, the condition of the auditory nerve and the patient's motivation to learn how to use sound.

Cochlear implant opponents say it is important to expose a deaf child to deaf culture other hearing-impaired individuals and American Sign Language, for instance rather than to try to "fix" them so they belong in the hearing world.

"Every responsible advocate for cochlear implants agrees that a child with implants is still deaf," says Harlan Lane, a hearing professor of psychology at Northeastern University in Boston and an advocate for deaf culture. "The message that parents ought to get is your child is deaf and nothing can fix that. You should have sign language and deaf role models, and you can embrace deaf culture. Most parents want a quick fix. They want technology to fix it."

Not a cure, but one treatment

While the debate goes on as to whether cochlear implants are a "fix," the process is by no means quick or easy.

First, there is surgery. The device costs upward of $30,000, which usually is covered by insurance. Months, even years, of follow-up listening and speech therapy follow the surgery. When a child is implanted, his residual hearing is destroyed, taking away hearing aids as an option for communication.

But if the implant is successful, the payoff is worth it, Ms. Steinberg says.

"It really wasn't a hard decision to get the implant for Rachel," she says. "It would give her access to the whole world. It would help her to speak. We could learn sign language if she wanted to. This way she would have all the tools."

A good portion of Rachel's therapy included being surrounded by speech. That meant her family would talk, talk, talk to her. If her mother was making lunch, she would describe each step she was taking, such as, "I'm pouring juice. It is cold. It is in a glass."

"I would talk until I was blue in the face," Ms. Steinberg says. "It felt silly at first, but after a while, you don't even know you are doing it."

Ms. Steinberg and her husband, Andy Knobel, say their work has paid off. Rachel attends a mainstream private school and is able to participate in activities such as swimming and ice-skating lessons.

"If this were 20 years ago, we would have learned sign language," Mr. Knobel says. "But to expect the whole world and all the people Rachel is going to meet to learn it, that is unrealistic. We wanted to find something that would not hold her back as a person. The cochlear implant is everything we could have hoped for in that way."

Researchers are beginning to get encouraging data about the young children with implants who are now school-aged.

A Johns Hopkins study in May 1999 followed 35 children with implants in Maryland schools. The study determined that implants led to higher rates of mainstream education and a lower dependence on special education services.

The study also found a cost savings of $100,000 to $200,000 from kindergarten through 12th grade for a child with cochlear implants compared with a child without implants who attends a school for the deaf.

Previous research also found that the average reading level of a high school student who relied on sign language was about the fourth-grade level.

With the increase in young children with implants and their greater absorption of spoken language, reading abilities should improve, Dr. Niparko says.

"The young children we im-planted since 1995 are just getting into their school years," he says. "Our research shows that the majority of them are in mainstream programs within three or four years of getting the cochlear implant. There is a catch-up period, but after a time, the language growth parallels that of normal peers. The cost to educate goes down substantially."

Keeping options open

Dr. Lane remains skeptical of the good news for implanted children and education.

"About 3 percent of implant candidates are children who became deaf after learning English," he says. "I want to see some results for the 97 percent who were born deaf. Those results would not be encouraging. If you give those kids a word test, they might repeat what you have said, but they won't understand. There has yet to be a clear, scientific demonstration" of real language understanding.

Rory Osbrink, now 23, was one such child. He lost his hearing at age 3 and was given an implant a year later. The cochlear implant did not work miracles for him, he says.

"I could hear sounds, but I could not exactly distinguish them," he communicated via e-mail at his request. "I could barely understand speech and had to rely more on my lip-reading skills. I was basically in speech therapy 50 percent of my free time."

Mr. Osbrink decided to discontinue using the cochlear implant when he was 17.

"It was not working for me anymore," he says. "I had realized my potential growth and understanding of the audio-oriented environment was limited, and I was reaching my maximum. Since I was not improving any more than I was, I felt the [implant] became more of a hindrance than an aid."

Mr. Osbrink has a bachelor's degree in philosophy and deaf studies from Gallaudet University. He is taking graduate courses at the university, located in Northeast. He relies on American Sign Language (ASL) as his primary form of communication, he says.

"I do not resent my parents for their decision," he says, referring to the implant.

"It was one that was made with my best interest in mind. I benefited from it indirectly education, new understanding, unique experiences."

Still, Mr. Osbrink, like Dr. Lane, says he is against giving children implants.

"By exploring ASL, a child will understand more of the world, though it may be different than that of a hearing person's," he says. "Oralism, which is heavily correlated with the implant, is advocated to the parents. That severely limits what a child can understand about their environment."

The National Association for the Deaf (NAD), a large nonprofit advocacy group, says in its latest policy statement on cochlear implants that parents should consider every aspect of implantation before acting.

"Many within the medical profession continue to view deafness essentially as a disability and an abnormality and believe that deaf and hard-of-hearing individuals need to be fixed by cochlear implants," the statement says. "This pathological view must be challenged and corrected by greater exposure to and interaction with well-adjusted and successful deaf individuals. Cochlear implants do not eliminate deafness… . The NAD encourages parents and deaf adults to research their options besides implantation."

Finding a middle ground

No matter which side of the argument one chooses, cochlear im-plants are a reality, says Debra Nussbaum, an audiologist and coordinator of the Cochlear Implant Education Center at the Laurent Clerc National Deaf Education Center in Northeast.

The center, open since fall 2000, is located on the campus of Gallaudet. It seeks to expose deaf children with implants to both sign language and spoken English, Ms. Nussbaum says.

"Even four or five years ago, the [cochlear implant] technology was such that it could provide some sound, but not enough for higher-level learning and speaking," she says. "The technology has improved a lot. There has been some acknowledgment in the deaf community that implants can be beneficial. It is not the answer for all, but can be a wonderful tool.

"Our belief is that these kids are going to get cochlear implants, but there are a whole range of children with a whole range of needs," Ms. Nussbaum says. "Some implant centers are saying that if you want a child to succeed, don't use sign language. I say sign language is not going to impede speech. These children need a good, structured program that will teach them what sounds mean."

Having cochlear implants included in rather than rejected from deaf education is proof that the tide is turning a bit, says Judith Coryell, coordinator of the deaf education program at Western Maryland College in Westminster.

"The vast majority of the students in the program are deaf and come in with a bias against cochlear implants," Ms. Coryell says, "but we are working to get them to discuss different issues. There is going to be an increased number of [implanted students] in the schools in which they will be teaching. Some may still be against the concept personally, but by including cochlear implant students, they are going to have more flexibility than if excluding them."

Ms. Coryell is also the parent of two deaf children. Neither of her daughters, ages 12 and 14, has received an implant.

"My family looks at the whole issue," she says. "The hearing perspective is to say, 'If you had the choice to be hearing, wouldn't you be?' That is one way of looking at it, but it is not an appreciation for a full life as a deaf person."

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