Doctors hopeful, but foes gather in deaf community

EAR IMPLANTS: HELP OR HARM?

May 13, 1993|By Deidre Nerreau McCabe | Deidre Nerreau McCabe,Staff Writer

Johns Hopkins professionals held a news conference yesterday so that 4-year-old Jeremy Scharf of Reisterstown could show how a cochlear implant has helped him hear and learn to speak.

As Jeremy, the third child to receive the surgical implant at Hopkins, sat on a marble table surrounded by television cameras, an audiologist coached him to repeat vowel sounds to demonstrate skills he has gained since his operation three months ago.

While Jeremy's parents welcome his accomplishments, saying the device lets him function in a hearing world, many members of

the deaf community oppose the use of cochlear implants for children like Jeremy who cannot hear.

Opponents say the implants are unnecessary, destructive and immoral.

"Most of us in the deaf community are opposed to the use of implants, especially [for] a child," said Harvey Goodstein, president of the Maryland Association for the deaf and a professor at Gallaudet College in Washington. "Most parents, although well-intentioned, often are misinformed as to how successful these implants are. Parents get false hopes that children, once implanted, will be able to function like a hearing person, but they can't. Patients do not show the ability to hear like a hearing person."

Dr. John K. Niparko, who operated on Jeremy, said the implant was never intended to allow deaf people to hear as others do.

"It provides adequate information for them to understand and interpret speech," which is extremely difficult for nonhearing people even with hearing aids, said Dr. Niparko, director of the Children's Implant Program at Hopkins.

The cochlear implant works like this: Sounds picked up by a microphone are sent to a processor -- a box worn at the waist. The processor codes them electronically and sends them to a transmitter behind the ear, then through the skin to a receiver. Implanted under the scalp and resting on a bone behind the ear, the receiver forwards the signals through wires into the cochlea, part of the inner ear. From there, the signals are sent through the auditory nerve to the brain, where they can be recognized as spoken words or some other type of sound.

Since the procedure was approved for adults in 1985, 6,500 people nationwide have had the operation. Since 1990, 1,500 children have been given implants, which cost between $25,000 and $30,000 for the device and medical expenses. The two-hour operation is considered low-risk, Dr. Niparko said.

The recipient of an implant needs months of training to learn how to interpret the sounds. It is not unusual for significant progress to take six months to a year, said Dr. Niparko, who performed about 40 operations on children at the University of Michigan Medical Center before coming to Hopkins in 1988.

Dr. Niparko said research shows about half the children with implants will be fully mainstreamed into the hearing world eventually and another quarter will reap some benefits. The rest will need to communicate in nonverbal ways, he said.

Until 1990, implants were used for adults who lost their hearing after learning to speak, an option the deaf community does not oppose. Controversy began after the Food and Drug Administration approved the usage for children diagnosed as profoundly deaf since birth.

Advocates for the deaf accused doctors of preying on the emotions of hearing parents who desperately want a "normal, hearing child." A position paper by the National Association of the Deaf says: "Clinics performing implant surgery need to cease projecting to the public an image of deaf people as unhappy, fearful [and] maladjusted and in desperate need of the faculty of hearing."

The association cites unanswered questions, such as whether electrically stimulating the nerve might cause long-term damage children.

James E. Tucker, superintendent of the Maryland School for the Deaf, challenged the benefit of implants for young children, saying current technology is "primitive" and research inconclusive.

"I see cochlear implants as equal to sex change operations," he said. "We are talking about changing a person's self-identity."

Mr. Tucker said he knows six people who have had implant operations but no longer use the devices.

"[Parents] are being rushed into this based on information frodoctors only," he said. Jeremy's parents, Roni and Alan Scharf, could not disagree more. Since their son's implant was "activated" two months ago, it has opened a whole new world, they said.

"He likes birds, he picks up the telephone on the first ring, he likes his music box -- all things he never paid any attention to before," Mrs. Scharf said.

The family has three other children between the ages of 8 and 13, all hearing. The parents learned when Jeremy was 9 months old that he was profoundly deaf.

"For our child, we had already made the decision that he would be as much a part of the hearing world . . . as possible," said Mrs. Scharf. "I have two first cousins who are deaf, and it has isolated them in their professional and personal lives."

"He's a very happy child," said Jeremy's father. "He tells us every day we did the right thing through his happiness."

Dr. Niparko stressed that implants are an option and not something suited for every deaf person.

"Obviously, this would not work unless there was strong support and motivation from the family," he said.

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