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4:31 pm
Sun April 8, 2012

Cochlear Implants Redefine What It Means To Be Deaf

Originally published on Sun April 8, 2012 4:32 pm

There was a time when a child born deaf had few choices. For more than a century, the only option for parents was to send their son or daughter away to a boarding school for the deaf. There, the children and the schools thrived in the shadows, embracing a distinct culture of silent communication.

Recent advances in medicine and technology are now reshaping what it means to be deaf in America. Children who could never hear a sound are now adults who can hear everything. That's having a dramatic impact on the nation's historic deaf schools as well as the lives of people.

One of those people is 31-year-old Shehzaad Zaman, who was born deaf. Everyone else in his family could hear, and his parents worried — they wanted him to fit into a hearing world.

"My parents wanted me to learn how to speak and how to listen, despite not being able to hear," Zaman tells weekends on All Things Considered guest host Laura Sullivan.

He went to a special school at first, but in third grade his parents changed their minds. They sent him to therapy to teach him to read lips and moved him to his neighborhood school in Long Island, N.Y. He learned to play sports and make friends, but it was never easy.

"All my peers were able to use the telephone and have conversations in noisy restaurants, and it was getting harder and harder for me to have a conversation outside of one-on-one or one-on-two," he says.

The summer before his senior year, a small miracle happened. A new piece of technology, called a cochlear implant, was helping deaf people hear. Doctors surgically inserted an implant into one of Zaman's ears. He woke up and the world was an entirely new place.

"At that time, I didn't know what I was hearing. I was hearing so many different things that sounded so mechanical," he says. "It didn't sound natural to me. I was hearing the air conditioner, or running water or a bird chirping and I didn't know what it was, so it really took some time for my brain to process."

Zaman says he would have to sit in the backyard just to try to absorb all the sounds he could now hear.

More than half of all deaf children are now getting cochlear implants, and every year the number increases. One-in-four deaf adults also now have it, though it takes longer for adult brains to adapt to hearing sound.

For Zaman, it was practical as well as emotional. He wanted to go to medical school and he knew a doctor needed to hear.

"In medicine, it's not acceptable to hear 70 percent of information, because that can make a difference in terms of quality of patient care," he says. "So I was always trying to get up to 100 percent accuracy in terms of understanding the information."

Today, he is a physician in Sacramento, Calif., and last year he received a second cochlear implant in his other ear, bringing his hearing close to 100 percent. He says he no longer thinks about not being able to hear. Only in rare moments, if there's a lot of loud, competing noise, does he search for someone's lips.

"We live in a hearing world, a hearing society, and I was just happy because I could have much more ease in terms of communicating with people," he says.

The Cochlear Technology

Zaman is already on his fourth upgrade of the device. Dr. John Niparko, an ear specialist at Johns Hopkins Hospital, says there will likely be many more in the years ahead.

"Just like our cell phones [and] our laptops, cochlear implants are becoming smarter in terms of bringing in the most important sounds to the ear of the implant listener," Niparko tells NPR's Sullivan.

Experts say that while they know that 1 in 1,000 children are born genetically deaf every year, it's almost impossible to track the rate of deafness over time. Hearing impairment is a spectrum — and it changes.

So have its causes. Diseases like rubella, scarlet fever and measles that caused hearing loss have been all but eradicated with vaccines. But more premature babies with hearing loss are surviving. There also appear to be more children with autism, which has been linked to hearing difficulties.

What is certain is that more than half of the children who once were deaf — for whatever reason — can now hear. Niparko has performed hundreds of the surgeries, and calls the cochlear implant a remarkable technology.

"It can take in sound waves much like a hearing aid would," Niparko says, "but instead of simply amplifying those sound waves ... [it] can take that energy and translate it into an electrical code."

That code is then sent along a series of contacts placed next to the hearing nerve, and along with small packets of electricity, that hearing nerve is activated, thus re-creating the act of hearing, he says.

The implant works for the vast majority of deaf people, Niparko says, but unfortunately there is a socioeconomic divide that prevents the availability of the device for all deaf cases.

"The device itself is about $32,000 [and] the hospital costs and surgery adds about another $10,000 to $12,000 on that," he says.

With the invention and improvement of the cochlear implant technology, Niparko says all children born deaf and without other disabilities have the chance to be fully integrated into a hearing society.

So in the future, could deafness be a choice? To that, Niparko says, "We're already there."

The Changing Role Of Deaf Schools

For everything this technology has done for deaf people, it has created an uncertain future for deaf schools across the country.

"Deaf kids have changed, so I think that schools are going to have to change," says Dr. Richard Miyamoto, a former board member of the Indiana School for the Deaf.

More than 80 percent of children who are or were hearing impaired now attend their local schools. Just a couple decades ago, 80 percent of hearing impaired children attended deaf schools.

"In the past, we didn't have much to offer deaf children so they would automatically be in a sign culture and grow up that way," Miyamoto says. "That was comfortable, but when cochlear implants came along and there was something to be done, many of them were successful. So they ended up living their lives in the hearing world rather than the deaf world."

Miyamoto says the drop in enrollment has led many deaf schools to rethink their mission.

"So what deaf schools have done is brought in many more complex kids with multi-handicap situations, which is not part of their usual student population," he says.

Miyamoto says it's critical that deaf schools not disappear, especially for children who can't be helped by the medical advances.

"I think there is clearly a place for the traditional deaf schools because not everybody does well with the current tech," he says.

One such school that is adjusting to the changes is Kendall Demonstration Elementary School on the campus of Gallaudet University in Washington, D.C., the nation's premier deaf college.

The school once had more than 500 students, but that number has shrunk to 256. In 1975, Congress passed the Education For All Handicapped Children Act, which mandated all schools accommodate children with disabilities.

"The law said kids should be, to the maximum extent appropriate, educated in their home school with non-disabled peers," says Ed Bosso, who heads the elementary and high school at Kendall. "So people start there, and what often happens is kids fail their way into the deaf school."

These days, the school has found a niche helping students adjust to their implants before they leave for a traditional school.

"Even a kid who gets implanted, until that implant starts working [and] until they can listen to learn they have to learn to listen," he says. "So while they're learning to use their device, they're missing a lot."

The school is also now reaching out to children with multiple disabilities in addition to hearing loss. One of the more common is autism.

"We are seeing students that have additional disabilities at our doorstep, and people need to know how to serve them," he says. "So we're going to try to fill that gap and support people nationally in that."

It's a touchy subject for some at the school, Bosso says, breaking from decades of tradition and history. The change has already come, however, and this year one-in-five students has a second separate disability in addition to not being able to hear.

Copyright 2014 NPR. To see more, visit http://www.npr.org/.

Transcript

LAURA SULLIVAN, HOST:

It's WEEKENDS on ALL THINGS CONSIDERED from NPR News. I'm Laura Sullivan.

For more than a century, parents of deaf children had few options when it came to finding an education for their children. Most sent their kids to boarding schools for the deaf. Many of the children and the schools thrived in the shadows, embracing a distinct deaf culture.

But recent advances in medicine and technology are now reshaping what it means to be deaf in America. Children who could never hear a sound are now adults who can hear everything. And that is having a dramatic impact on the nation's historic deaf schools as well as on the lives of people like Shehzaad Zaman. Zaman was born deaf 31 years ago to a family where everyone else could hear. His parents were worried. They wanted him to fit into a hearing world.

SHEHZAAD ZAMAN: My parents wanted me to learn how to be able to listen and to be able to speak despite not being able to hear.

SULLIVAN: Zaman went to a special school for the deaf at first, but in third grade, his parents changed their mind. They sent him to therapy to teach him to read lips and then they moved him to his neighborhood school in Long Island, New York. He learned to play sports and make friends, but it was never easy.

ZAMAN: You know, all my peers were able to use the telephone and, you know, have conversations in noisy restaurants. And it was actually getting harder and harder for me to have a conversation outside of one-on-one or one-on-two.

SULLIVAN: But then the summer before his senior year, a small miracle happened. A new piece of technology, called a cochlear implant, was helping deaf people hear. Doctors surgically inserted one into his ear. He woke up and the world was an entirely new place.

ZAMAN: At that time, I didn't know what I was hearing. You know, I was hearing so many different things that sounded so mechanical. And I was hearing the air conditioner or running water or the bird chirping, and I didn't know what it was. So it really took some time for my brain to process. And I would have to sit in the backyard just to try to absorb all the sounds.

SULLIVAN: More than half of all deaf children are now getting cochlear implants, and every year, the number increases. One-in-four deaf adults also now have it, though it takes longer for adult brains to adapt to hearing sound. For Zaman, the decision to get an implant was practical as well as emotional. He wanted to go to med school, and he knew a doctor needed to hear.

ZAMAN: In medicine, it's not acceptable to be able to hear 70 percent of the information, because that can make a difference in terms of the quality of patient care. So I was always trying to, you know, get up to 100 percent accuracy in terms of understanding the information.

SULLIVAN: Today, he is a physician in Sacramento. And last year, he received a second cochlear implant in his other ear, which has brought his hearing to close to 100 percent. He says he no longer thinks about not being able to hear. Only in rare moments when there's a lot of noise does he search for someone's lips.

ZAMAN: You know, we live in a hearing world, in a hearing society, you know, so it's really important to be able to hear. And I was just happy because, you know, I would be able to have much more ease in terms of communicating with people.

SULLIVAN: Zaman is already on his fourth upgrade of the device. And Dr. John Niparko, an ear specialist at Johns Hopkins Hospital, says there will be many more in the years ahead.

DR. JOHN NIPARKO: Just like our cell phones, our laptops are getting smaller, faster, smarter, cochlear implants are becoming smarter in terms of bringing in the most important sound signals that are in the environment to the ear of the implant listener.

SULLIVAN: Experts say that while they know that one in 1,000 children are born genetically deaf every year, it's almost impossible to track the rate of deafness over time. Hearing impairment is a spectrum, and it changes.

So have its causes. Diseases like rubella, scarlet fever and measles that have caused hearing loss have all but been eradicated by vaccines. But more premature babies with hearing loss are surviving. There also appears to be more children with autism, which has been linked to hearing difficulties.

But what is certain is that more than half of the children who once were deaf, for whatever reason, can now hear. Dr. Niparko has performed hundreds of the surgeries.

NIPARKO: Well, the cochlear implants are remarkable technology that can take in sound waves much like a hearing aid would. But instead of simply amplifying those sound waves and delivering them to the eardrum, what the cochlear implant does is to take that energy and translate it into an electrical code. That code is sent along a series of contacts, which are placed directly next to the hearing nerve. And through microcurrent injections, through small packets of electricity, we can activate that hearing nerve, thus recreating the act of hearing.

SULLIVAN: And will that work for most deaf people?

NIPARKO: For the vast majority of deaf people, there is, in fact, a viable, vital hearing nerve that retains its responsiveness to this kind of stimulation.

SULLIVAN: If the majority of deaf cases can be treated by a cochlear implant, why doesn't everybody get one?

NIPARKO: There remains, unfortunately, a socioeconomic divide with respect to access to cochlear implantation.

SULLIVAN: How much does it cost to get one?

NIPARKO: The device itself is about $32,000. The hospital costs and surgery add another 10 to $12,000 on that.

SULLIVAN: So does insurance cover it?

NIPARKO: Insurance generally does cover it, although there are some - unfortunately some Medicaid programs now that have constrained access.

SULLIVAN: If parents have a child today that's born deaf, what can they expect in the years ahead? I mean, might their child become just fully integrated in mainstream society and, I mean, even be just taken for a hearing person?

NIPARKO: We fully expect that a child without other disabilities is, in fact, going to be fully mainstreamed within three to five years of receiving a cochlear implant.

SULLIVAN: Do you think that means that there will be a time in the future where deafness is a choice?

NIPARKO: Well, I think we're already there, Laura. As individuals have learned more and more about this technology, they have learned that it wasn't developed as a referendum on deaf culture. It is a natural outgrowth of the technology boom that we have seen in our society over the past 30 years.

But as technologies tend to evolve, cultures tend to evolve. And we may be seeing a new culture evolve that uses this technology but still has foundations in the deaf world.

SULLIVAN: That's Dr. John Niparko from Johns Hopkins Hospital. For everything this technology has done for deaf people, it has created an uncertain future for deaf schools across the country. Dr. Richard Miyamoto is a former board member of the Indiana School for the Deaf.

DR. RICHARD MIYAMOTO: Deaf kids have changed, so I think that schools are going to have to change.

SULLIVAN: More than 80 percent of children who are or were hearing impaired now attend their local schools. Just a couple decades ago, those kids attended deaf schools, because there weren't any other options.

MIYAMOTO: In the past, we really didn't have much to offer deaf children so they would automatically just be in the sign culture and would grow up that way. And that was comfortable for them. But when cochlear implants came along and there was something to be done for deaf children, many of them were successful. So they ended up living their lives in the hearing world rather than the deaf world.

SULLIVAN: Miyamoto says the drop in enrollment has led many deaf schools to rethink their mission.

MIYAMOTO: What deaf schools have done is brought in many more complex kids with multi-handicapping situations, which are probably not part of their usual student population.

SULLIVAN: It's critical, however, that deaf schools adjust, Miyamoto says, not disappear.

MIYAMOTO: Oh, I think there's clearly a place for the traditional deaf schools because not everyone does well with the current technology.

ED BOSSO: So this is like a fifth grade class. And let's just go in and take a look real quick at one.

SULLIVAN: Ed Bosso opens the door to fifth grade at the Kendall Demonstration Elementary School on the campus of Gallaudet University, the nation's premiere deaf college.

BOSSO: These tables are grouped in a semicircle right around the teacher's desk.

SULLIVAN: Bosso heads the elementary and high school here. The desks in this classroom all face each other with the teacher at the head. Bosso explains that this school is bilingual. It teaches in sign, but it also teaches English out loud. That's the way this school has always taught. But even he can sense change is coming. There are 265 students here.

How does that compare to decades past? More, less, about the same?

BOSSO: Oh, it's less. It's less. If you would look at the history of schools for the deaf, there was a point in time where these schools were burgeoning because of the rubella bulge. I mean, at that time, rubella caused deafness. We didn't know if the medications around it caused deafness. And so we had a huge group of students who were deaf because of that.

SULLIVAN: When was that?

BOSSO: It started in the '60s, into the '70s, '80s.

SULLIVAN: At one point, the school had more than 500 students.

BOSSO: So now we have here one first grade, one second grade, one third grade, one fourth grade. Back then, we probably had two first grades or three first grades, three second. So there were more peers.

SULLIVAN: Then in 1975, Congress passed the Education for All Handicapped Children Act. It mandated all schools accommodate children with disabilities.

BOSSO: The law said kids should be, to the maximum extent appropriate, be educated in their home school with non-disabled peers. So people start there. And what often happens is kids fail their way into the deaf school.

SULLIVAN: These days, the school has found a niche helping students adjust to their implants before they leave for a traditional school.

BOSSO: Even a kid who's born and gets implanted, until that implant starts working, until they can listen to learn, they have to learn to listen. So while they're learning to listen - learning to use their device, they're missing a lot.

SULLIVAN: The school is also now reaching out to children with multiple disabilities in addition to hearing loss. One of the more common is autism.

We are seeing students that have additional disabilities at our doorstep, and people need to know how to serve them. And so we're going to try and fill that gap and support people nationally on that.

If it sounds like Bosso is navigating the issue delicately, he is. It's a touchy subject for some at the school, breaking from decades of tradition and history. But the change has already come. This year, one-in-five students have a second separate disability in addition to not being able to hear. Stay with us on WEEKENDS on ALL THINGS CONSIDERED. Transcript provided by NPR, Copyright NPR.