Reya, a bright, sunny girl with a fondness for dogs, communicates with her parents mostly through sign language. But she is learning how to hear, and how to speak. The implants that allow this to happen are new to her -- she had her first about six months ago, and just had an implant in her other ear within the last month. Pitzo, 29, of Wausau, said there is already a difference in how Reya relates to the world around her.

The Pitzos were lucky: Their insurance, Anthem Blue Cross and Blue Shield, covered both of Reya's cochlear implants. That's not always the case, said Dr. Nancy Puetz, an audiologist with the Wausau School District.

"The implant is a surgical procedure," Puetz said. "You're looking at extensive costs regarding an implant, upwards of $50,000 to $60,000."

A new law, unique to Wisconsin, will require that health insurers cover the cost of hearing aids and cochlear implants for children. Puetz said the bill, authored by Sen. Julie Lassa, D-Stevens Point, and signed into law in late May, addresses a real need.

When the advcacy group Wisconsin Families for Hands & Voices surveyed families in 2007, it found that 54 percent of parents it surveyed did not have insurance that covered any kind of hearing aid or cochlear implant.

There are foundations that provide funding, Puetz said, like the Children's Miracle Network and the Lion's Club, and there is a program that allows clinical audiologists to give "loaner" hearing aids to children.

"But all of that takes time," Puetz said. "There's always the time factor. You need to get hearing aids for that child."

'Through broken glass'

The external parts of a cochlear implant, sometimes called a "bionic ear," look a bit like a traditional hearing aid. But unlike hearing aids, they do not simply amplify sound.

"The implant bypasses the ear altogether," Puetz said. "Electrodes implanted in the inner ear don't even go through the cochlea. It directly stimulates the inner ear, and bypasses the damaged ear."

The result is that those who are deaf or severely hard of hearing are given access to the audible world. The way they experience sound is not precisely the same as the way we do, but it is similar enough that they are able to carry on spoken conversations.

"The best way I can describe it, based on adults who have lost hearing and then had (cochlear implants) ... is that it's like listening through broken glass," Puetz said.

Still, there is a process, including auditory training and "listening therapy," to teach even very young children with cochlear implants how to hear.

"When you put on glasses, it's fixed," said Barbara Arndt, a deaf and hard of hearing teacher with Wausau schools. "It's not like that when you get a cochlear implant. As a baby, you have heard words from the day you were born. ... These kids haven't heard that."

With Reya, for example, Puetz said she has her practice identifying the sounds different animals make without letting Reya read her lips. And although Pitzo and her husband, Joe, have been sanguine about what an implant can and cannot do, that is not the case with all parents.

"That's another huge issue: unrealistic expectations of what an implant does," Puetz said. "It doesn't just make you hear. There is a lot of work and rehabilitation that has to take place."

Puetz also emphasized the importance of parents making decisions early in their children's lives, as soon as they find out their kids have severe or profound hearing loss. The sooner the cochlear implants are added, the sooner children can adapt to the hearing world.

Kai Jones, 25, of Wausau learned that her daughter Jayda was deaf at the hospital just after she was born.

"I almost went through a denial stage," Jones said. "I kept thinking, well it's just mild (hearing loss), or she's just a baby. Once we had the final diagnosis at 7 months, it was like, OK, now we know for sure. Where do we go from here?"

The first thing Jones did was start learning American Sign Language.

"That was her main source of communication," Jones said.

Jones also got her daughter involved with the deaf community through a mentor program that provides families with social and sign-language support, through social events and networking with other families of deaf children. For her, the process of getting cochlear implants for her now-3-year-old daughter -- Jayda has one implant, and will have a second surgery this summer -- was secondary.

Opposition from the deaf

For some in the deaf community, though, the idea of a cochlear implant is something of an insult, and its promotion in state law is a sign of discriminatory attitudes.

"I'm against it, myself, because it's not worth it to have people having surgery to make them able to hear," said Patsy Mais, 57, of Wausau.

Mais, who spoke through a video-phone interpreter, has been deaf since she was about 3 years old. She belongs to the Wausau-Rib Mountain Association of the Deaf, a group that provides social support and resources to deaf people locally.

"I know that parents are wrong," Mais said. "They should leave their children as they are. If they are deaf, whether they are born deaf or if they grow and become deaf, they can learn sign language. They can learn deaf culture and they can associate with other deaf people."

"God made them that way," Mais added.

Mais was echoing the opinion of many within the deaf culture. A group called Audism Free America (AUDISM FREE AMERICA) circulated an online petition requesting that Gov. Jim Doyle not sign the cochlear implants bill into law.

"The notion that being deaf is an affliction and an abomination which alienates one from society ... is a myth," the petition said. "Not only is there a danger that some infants and children can be harmed by cochlear implants, there is also the potential danger that people interpret this bill to mean that they must have their child implanted."

The petition asked that, if the bill were to be signed, that it be amended to include insurance coverage for the removal of cochlear implants, as well as mandatory coverage of American Sign Language "materials, therapy and support services."

Though the bill was ultimately signed into law, that petition garnered more than 700 signatures.

For the parents of children with cochlear implants, and those who work with them, the issue should be a matter of a parent's choice -- and later, Jalena Pitzo said, it will be her daughter's choice.

"It's something she's going to have to consciously decide to put on every day," Pitzo said. "When she gets (old enough), she's going to decide for herself. At least this way she has the choice. We wanted to do this early enough for her that she had the chance to learn spoken language."

It is hard to separate the fact that many parents find cochlear implants desirable from the idea that deafness is a disability -- but like Mais, many people who are deaf experience deafness as a culture instead.

"I feel strongly that it really is a parent's decision," Puetz said. "If a parent is completely deaf and that's their language, they may decide that this is not what they want to do."

For parents such as Pitzo and Jones, the decision to get cochlear implants for their daughters is not a way to "fix" them or take them out of the deaf community. Instead, it is a way to give them options.

"Jayda gets to have the deaf community in her life for the rest of her life," Jones said. "And she will also be in the hearing community. She's just going to be bilingual."

http://www.wausaudailyherald.com/article/20090607/WDH06/906070321