A sound barrier of another sort

Cochlear implants put parents of deaf children in a dilemma

By DARLA CARTER, The Louisville Courier-Journal (January 11, 1999)

It's only a television drama, but an ongoing story on NBC's popular "ER" has been very real to parents of some deaf children: Should one of the show's fictitious doctors have a cochlear implant surgically inserted into his child's ear?

The decision can be a tough call for parents: Accept their children as deaf or gamble up to $40,000 on the device, which has been hailed as miracle cures and ridiculed as the hearing world's attempt to "fix" healthy deaf children and deprive them of the rich deaf culture of sign language.

All children benefit somewhat from the devices, which process sound outside the body, then send it past the damaged inner ear directly to the brain. One out of five recipients do well in the hearing world -- flourishing in mainstream schools and learning to speak clearly enough to talk on the phone and even sing in the choir.

But for reasons that aren't yet known, others don't benefit as much: They may be able to hear enough to read lips better or perceive sounds such as wailing sirens or barking dogs.

A segment of in the deaf community rejects the devices outright, saying that deafness is something to be embraced, like one's race or ethnic background.

"Being deaf is not a personal tragedy that needs surgery," said Harlan Lane, a psychology professor at Northeastern University in Boston, who isn't deaf but is a leading opponent of putting the implants in children.

The issue carries particular weight in Kentucky, where the Louisville Deaf Oral School is a regional center for pediatric cochlear-implant rehabilitation. Besides attending classes at the preschool, children who receive the devices are given speech therapy and auditory training, which includes learning how to listen and understand various sounds and respond to them.

The school, which is celebrating its 50th anniversary this academic year, is one of five pediatric cochlear-implant rehabilitation centers in the region. (The University of Louisville's audiology program works with adults who receive the implants.)

The Deaf Oral School thinks parents ought to be the ones who decide whether a child undergoes the surgery, said its director, Mona McCubbin. As part of a team of professionals, the school's staff provides information to parents about the risks, ramifications and possible rewards.

It's important that it not be a snap decision, Dr. Julie Goldman, a Louisville surgeon who performs pediatric cochlear implants. "There's a lot of thought and evaluation and planning that goes into this before it's done," she said. The surgery is "not meant for everybody."

Designed for people who are beyond the help of hearing aids, the implants have been placed in about 21,000 children and adults worldwide, according to the Cochlear Corp. of Englewood, Colo., the leading manufacturer. More than half the recipients live in the United States.

The devices were introduced for adults 15 years ago, and the federal Food and Drug Administration approved the procedure for children nearly nine years ago. But the implants appear to be growing more popular as the technology improves and the pool of candidates expands. The minimum age for recipients was recently lowered to 18 months from 24 months, and severely deaf people are now eligible as well as the profoundly deaf.

In the practice where Goldman works, eight or nine such surgeries were done in 1998, compared with two or three in prior years.

The Derbytown branch of Self Help for Hard of Hearing People, a support and advocacy group, doesn't take a position on the implants. But it doesn't dissuade parents of deaf children, or adults, from choosing the surgery, President Carla Frizzle said.

There have been no concerted efforts by advocates for the deaf in the Louisville area to stop people from receiving the implants, but there are strong feelings about them.

Robert Goodwin, 34, a Middletown man who lost his hearing at age 5, wrote in an e-mail interview: "They're just overpriced hearing aids, and you're still deaf, no matter what."

Timothy Owens, who is deaf and runs the Louisville's Deaf Community Center, which serves about 3,000 people a year, said deaf people in general are concerned about the controversy. The center encourages parents of deaf children to educate themselves thoroughly about the procedure and to talk with deaf adults who've had the surgery and those who've chosen not to.

"It's crucial to ensure that an implant is intended to enhance the person's hearing, not to change who the person is," he said in an interview conducted by fax and through a telephone relay service for the deaf.

Between two worlds

Some advocates for deaf culture fear that the implants are creating a generation of people who fit neither into the world of the deaf nor that of the hearing.

Lane contends that there is scant scientific evidence that cochlear implants help the recipients acquire language skills. He said recipients risk failing to master the spoken word and realizing too late they haven't mastered sign language.

A counterargument comes from researchers like Dr. Dave Pisoni, a professor of psychology and cognitive science at Indiana University. Pisoni said that all children who receive cochlear implants show some benefit.

Roughly 20 percent of the recipients become "stars," he said. "These are children who are exceptionally good users of cochlear implants... You'd have a hard time telling the difference between one of these children and another hearing child."

But he and other experts acknowledge that the success rates vary widely, for reasons that are not known. "The most critical issue right now is why some children do so well and why other children do so poorly," Pisoni said.

Sandi Boone of Middletown said she's pleased with the progress of her daughter, Victoria, 3, who received an implant in April 1997. Before then, Victoria, who attends the Deaf Oral School, "didn't respond to a whole lot, and wasn't making a whole lot of sounds for her age," but she's speaking now, Boone said.

"She can be downstairs playing, and I can call her up for supper," Boone said.

One reason that Boone and her husband, John, agreed to the surgery for Victoria is that everybody else in the family can hear and speak. "We were aware of the controversy, and we felt like we made the best decision for her," Sandi Boone said.

William Frentz, 7, of Prospect, who has an implant, attends a mainstream school -- Dunn Elementary -- participates in sports and sings in a choir at his family's church. His mother, Cynthia Frentz, said the implant has helped him catch up with his hearing peers in language and vocabulary. "I could see four years ago he was getting further and further behind," she said. "Now, he's in a class where he's doing third-grade school work."

The device doesn't cure deafness, Goldman and others stress. But because it allows the user to hear sirens and other environmental sounds, many parents think that it enhances a child's safety, at the least.

"As far as hearing the siren like you and I hear it, they can't do that," Goldman said, "but they can be aware that there is a sound . . . and it's coming from over here."

Frizzle, who heads the deaf self-help group, said she has received mixed reviews from recipients. "There's two members in our local organization that both have them," she said. "One gets by OK; it helps. The other one doesn't see any difference whatsoever."

In some instances, Frizzle said, environmental sounds can be more of a curse than a blessing, if an implant recipient is bothered by noise.

Overzealous promotion

Lane said that he thinks surgeons and other implant supporters are too zealous in promoting them.

That's a view shared by Goodwin, of Middletown. "There are doctors out there who want to push them, giving them glowing reviews, while pushing aside those who have had problems with the implants," he said.

Local surgeons who can perform the implants include at least two at Jewish Hospital and 12 at Kosair Children's Hospital, according to spokeswomen for those facilities.

Dr. Ian Windmill, associate professor and director of audiology at the University of Louisville School of Medicine, said he thinks that local doctors present the implant as an option, rather than push it on anyone.

Windmill and Goldman are aware that some recipients grow frustrated, or become self-conscious about wearing the external processor that makes the implanted devices work. Some, who had lost their hearing, describe the sound from the implant as robotic or high-pitched.

But Windmill said that to children who were born deaf, the sounds they hear after the implant are "very natural to them."