New world of hearing

From: Toledo Blade - Toledo,OH,USA - Feb 21, 2005

Although they are still controversial, cochlear implants increase options for deaf children

By VIRGINIA LINN
BLOCK NEWS ALLIANCE

PITTSBURGH - Six years ago, Bonnie Russo was in Erie, Pa., to attend a soccer tournament for her son, Marco.

Along for the ride was her younger son, Nino, who was 11. He has a cochlear (pronounced "COKE-lee-ar") implant, a device that helps profoundly deaf people hear.

The family stopped at a fast-food restaurant and encountered students from a New York school for the deaf. They took one look at Nino's implant and started signing feverishly with the help of their interpreter. They assailed Mrs. Russo for choosing the implant for her son. But she was having difficulty conversing with them because of the signing.

"They were telling me how wrong I was,'' she said. "And there was Nino, ordering at the counter what he wanted, all by himself.

"When the interpreter got up to go to the rest room, we were lost. I couldn't sign; they couldn't speak.''

That situation erased any doubt that Bonnie and Jerry Russo may have had about pursuing an implant for Nino, who was born deaf.

The devices, which are surgically implanted into the skull to stimulate the natural mechanism by which the brain receives and recognizes sound, were approved by the Food and Drug Administration for young children in 1990, and have since been approved for babies at least a year old.

In 1991, when Nino was 3 1/2, he became one of the first young children in the region to receive the implant, in his right ear, and he and his family entered uncharted territory. Nobody really knew how effective this device would be in helping deaf children develop language. Would it help children fit better into a hearing world? And could could it be most effective?

Now at 17, Nino says he's doing just fine. He's a junior at Peters Township High School. He plays on three soccer teams, has friends, and makes good grades. He recently got his driver's license and chats on a cell phone like any other teen. And he's been named twice by teachers as Student of the Month, a rare honor in the district.

The progress of teens such as Nino Russo, who received implants when they were very young, is being watched closely by educators, researchers, and parents.

"He would have been a deaf-mute had he not gotten a cochlear implant," said Dr. Douglas Chen, an ear specialist at Allegheny General Hospital here who implanted Nino's device. "He represents what the potential of cochlear implantation is in children. ... It is literally a life-changing device.''

Mrs. Russo, a physician's assistant, agreed. "He completely interacts with the oral world and does not sign. I left that option up to him. At this point he has no desire to learn. He doesn't find a deficit anywhere in the ways of communicating."

Strangers who meet him and learn that he's deaf "walk away in awe,'' she said.

Looking ahead "I think it's the move of the future," said Linda Wood Gottfried, a speech and language pathologist at Flower Hospital in Sylvania. She works with about 15 youngsters who have undergone implant surgery, which is not done in the Toledo area.

"We have a group of children who are growing up with cochlear implants," she said. "It doesn't make hearing loss go away. You still are bound to technology. If the technology goes down, it's very difficult. But you can hear better."

People with implants usually experience less fatigue, have better hearing, and greater ability to hear even the difficult sounds such as "s," "t," and "z," she said. Consequently, they usually learn to speak better.

With hard work by the child - who must learn to listen and distinguish sounds - and the family, plus regular adjustments to the implant's computer; speech, reading, social interactions, and behavior often improve.

"You just see it across the board," she said. "Peer relationships are better because you can hear your friends. You can play sports."

Parents of babies who have received implants are instructed to speak often, carefully, slowly, with lots of intonation, and to sing.

An implant does not replicate sound as people with hearing know it. People who have implants (and who once had hearing) have described sounds as being a bit robotic, or similar to digitized speech, and even Mickey Mouse-ish, she said.

Ashley DeProspero is on the honor roll at Wayne Trail School in Maumee, where she's a fourth grader. She's played softball, piano, and drums, and belongs to a girl's club.

As a toddler, she was fitted for hearing aids, and at age 4 she had implant surgery at the University of Michigan Hospitals. After about six months of therapy, Ashley became much less aggressive and more secure, said her mother, Colleen DeProspero of Toledo. Gradually, she learned to differentiate between the new sounds she was hearing, and to assign meaning to them.

"The cochlear implant helps her to understand the world around her," said Ms. DeProspero, adding that Ashley learns faster and communicates better with friends. Had she received an implant at an earlier age, her mother said, her language skills would be even better.

Two of Trelesa Marriott and Richard Lininger's five children were born deaf. Leisha Lininger, 13, wore hearing aids from about 16 months until six when she received an implant. The following year was difficult because everything sounded so different to Leisha. The phenomenon has been described as like being dropped in a foreign country without knowing a word of the language. Initially, Leisha didn't understand anything she heard, not even her name, said Ms. Marriott, of Sylvania Township.

Her brother, Cail Lininger, 9, had the procedure in August. Six months later, he hears more than he did with his hearing aids, which decreased in effectiveness in the last few years, said Ms. Marriott. He hears birds and can hear distant sounds better. His speech is better, as is his sister's.

"When you can hear things, it's a lot easier to read," said Ms. Marriott, adding that Cail can now distinguish between the consonants "b" and "d."

After implantation, on-going therapy and technological adjustments are necessary, said Ms. Wood Gottfried, of Flower Hospital.

"The implant's overall effectiveness is only as good as the follow-up therapy," she said. She does "auditory-verbal" speech therapy, teaching children to listen carefully. She may, for example, cover her face with a magazine while reading a story, then ask questions about it, forcing the child to concentrate on what he or she hears without relying on facial cues or lip reading, said Ms. Wood Gottfried.

Cochlear implant surgery is not done in Greater Toledo. Likewise, there are no specialized audiologists locally who can "map" or adjust the implanted computer. Mapping is a time-consuming process usually done a few times a year, and it can take months to get an appointment. Most families travel to Michigan or Cleveland for mapping sessions, as they do for surgery, she said.

Interventions will come earlier as states increasingly require newborn hearing screenings. As of July 1, Ohio hospitals were required to test the hearing of all newborns, said Ms. Wood. Michigan hospitals have screened newborns for several years, and Pennsylvania has required screenings since 2001.

The period from birth to 3 1/2 is the "golden period" of plasticity, in which the brain is able to absorb language at an astounding rate that will never be matched in a person's lifetime.

Education issue How best to educate deaf children is an old debate that shows no signs of ending.

It's the oralists, those who believe that deaf children should focus on speaking, vs. those who support Total Communication, which includes auditory training and the use of the hand symbols in American Sign Language.

Nationally, 50 percent of deaf people sign and 50 percent enter oral programs. In Western Pennsylvania, most children diagnosed with hearing loss enter a Total Communication program, primarily because of the strong deaf community anchored around the 136-year-old Western Pennsylvania School for the Deaf in Edgewood.

Until being mainstreamed in seventh grade, Nino Russo attended the all-oral magnet school DePaul Institute. The 97-year-old school in Shadyside recently changed its name to the DePaul School for Hearing and Speech and is stepping up a marketing campaign to promote what it calls the remarkable success of its students in developing language and literacy skills in step with their normally hearing peers. The school has 70 students - most with cochlear implants - and will start a special program there in April for children 18 months to 3 years.

"The implants have changed the whole landscape of deaf education," said Apryl Eshelman, DePaul's director of institutional advancement. Years ago, students weren't mainstreamed until high school; now, with implants, digital hearing aids and newborn hearing tests, children are heading to regular schools by kindergarten or first grade - many with no trace of deaf speech.

DePaul's curriculum immerses children in listening, lip reading, language, and speech training. Sign language is not taught, which Ms. Eshelman says would prevent them from getting the full use of the implant to develop strong oral-auditory skills.

That's because it's easier to sign than to go through the intensive oral program, Dr. Chen said. Given the choice, a child will take the path of least resistance.

"If you put a cochlear implant in a child, probably an oral school is best suited to that child's educational needs," he said.

"Not everybody is going to be a Nino Russo. Some kids will do better even with a cochlear implant by signing. There is a place for a Total Communication school, but you'd like to at least give the cochlear implant its maximum opportunity right up front."

'Fixing' deafness? Those in the deaf community who oppose cochlear implants for children under the notion that it's an attempt to "fix" deafness, say children should not have to make a choice between the hearing or nonhearing world.

Implants are not a cure; children are still deaf, and because of that they are part of a population that has its own culture, language and heritage.

"What's wrong with being deaf?'' asked M.J. Bienvenu, chair of American Sign Language and Deaf Studies at Gallaudet University who was born deaf to deaf parents. "We've got a culture. We're bilingual. We're not half a person. We're actually double."

Although she acknowledged that many hearing parents have trouble learning sign language, she said it's a myth that they will "lose" their children if they become involved in deaf culture.

"Being a deaf person, I've experienced deaf culture and American culture. I don't feel a sense of loss from my end. I don't feel I'm missing anything. I'm a Ph.D. I travel. I have many wonderful friends. I have a full life. I do everything every average American does.''

According to the National Association of the Deaf statement on implants, language and communication should not be equated with speech: The absence of visual-language training, such as sign language, might result in developmental delays that become difficult to reverse.

Natalie Long, president of the American Society for Deaf Children, a nonprofit parent organization that is holding its 19th biennial convention in Pittsburgh this summer, said some deaf adolescents who have tried to be a part of the hearing world experience identity issues.

She's known of deaf children who have stopped using their implants when they've become teens and learned to sign.

"They want an identity. It's one of the things we all need in this world - the sense of belonging in this group.''

Don Rhoten, superintendent of the Western Pennsylvania School for the Deaf, said the explosion of technology is putting deaf people who sign on an even playing field with the rest of society. For example, the school recently acquired 20 video relay systems that allow the deaf to use the telephone with the help of a certified American Sign Language interpreter and high-speed Internet connection. (Ms. Bienvenu used the system to speak to this reporter.)

It's not perfect hearing Nino follows an Individual Education Plan for special education students in the Peters Township School District that allows him preferential seating in a classroom - usually in the front row - for optimal learning.

With just a hint of deaf speech (because he got the implant at 3 1/2), he continues with weekly speech therapy. He has difficulty making out conversation in large groups, where everyone is talking at once. The day of focused concentration at school leaves him wiped out. He uses closed captioning for some TV shows (but definitely not for sports or Steelers games, he said).

For soccer, Nino wears a sweat band over his exterior microphone to keep it dry; moisture can knock it out. He had a bit of a scare last summer when he attended a soccer Olympic development program in New Jersey. It was a hot, humid day and he had started to perspire before he put on his sweat band.

The device stopped working. He tried to text-message his mother in Pittsburgh, but she didn't know how to message back. Finally a roommate helped him make a phone call. Nino ended up putting the microphone in front of a fan overnight to dry, and by morning it was working.

"Over all these years, that was the first glitch," Mrs. Russo said.

He's never without hearing aid batteries - lots of them. They last between two and three days, so he carries them in his pants' pockets, book bag, everywhere.

Nino can swim if he takes off the outside attachment, but then he can't hear. He has to be careful when his friends are engaged in water balloon fights or are pushing people into the pool for fun.

"I hate to worry about it, but I hate to take it off because I want to hear,'' Nino said.

Blade staff writer Tahree Lane contributed to this report.

© 2005 The Blade.