Matthew Scott Moore
Democrat and Chronicle
A sound choice
By Greg Livadas, Staff Writer
Democrat and Chronicle
Although Yolanda Santana turns 3 today, the Rochester girl has experienced a rebirth of sorts. Yolanda, who is deaf, had a cochlear implant surgically placed in her head on Oct. 4.
Her parents hope the $40,000 surgery will enable her to hear things other children take for granted: her parents voices, a car horn, maybe even her favorite Mickey Mouse videos.
She is one of more than 22,000 people in the country nearly half of them children who have received a cochlear implant since the controversial devices were approved by the Food and Drug Administration in 1984. Improvements in technology allow a wider range of sounds to be heard and enable many people to talk on the telephone.
A cochlear implant is not a powerful hearing aid, and it wont create normal hearing. It sends electronic messages to stimulate auditory nerves at the cochlea, a snail-shaped organ in the inner ear.
The stimulated nerves may enable Yolanda to hear some sounds.
Although more children than ever are receiving implants, few live in Rochester, which boasts one of the largest deaf populations in the nation. Many in the deaf community feel that the implants may dilute deaf culture and that their use discourages American Sign Language.
Children with implants must undergo extensive speech therapy. They can expect a lifetime of changing batteries, avoiding metal detectors and dodging static shocks. Some have struggled with their own identities, not fitting into either the hearing or deaf worlds. And some have been shunned by deaf classmates, who call them "robots."
Yolandas journey will be a slow one.
"Think of her getting the implant as birth," said her surgeon, Dr. Charles Woods, a neurologist at University Hospital in Syracuse. "Shes never been exposed to sound before. A normal child takes a year before they start some talking.
"Its going to be a long process."
A deaf child
Yolandas parents, Carlos and Beth Santana Laidlaw of Rochester, first learned about cochlear implants in February when researching deafness on the Internet. The couple, both 40,
The couple, both 40, are unsure whether Yolanda was born deaf or whether a high fever followed by strong antibiotics at eight weeks old caused her hearing loss. She was diagnosed deaf at nine months.
"We had no clue," said Beth, an assistant professor of philosophy at Monroe Community College. Carlos is a salesman at Irondequoit Dodge.
Beth didnt immediately realize Yolandas lack of infant babbling was a warning sign. "She was always aware and with it."
The parents remember the audiologist who confirmed Yolandas deafness: He simply handed them pamphlets about hearing loss and local resources.
"Thats when we should have gotten information about cochlear implants," Beth said.
Carlos cried frequently after the diagnosis. Once he even slipped into Yolandas bedroom and started banging on pots as she lay asleep in her crib. There was no response.
"Thats when I fell apart;" he said.;
Three months later, Yolanda was enrolled in Rochester School for the Deafs infant program while her family began taking sign language classes.
Although Yolanda was fitted with powerful digital hearing aids, they never seemed to help. So the Santanas began considering a cochlear implant.
Hungry for more information, Beth joined an online parent support group, read books and articles about implants and met parents who chose the implants for their children.
Carlos even consulted a pastor for advice: "He said God provided the technology, why wouldnt you use it?"
They realize how controversial implants are in the deaf community and respect people who have chosen not to pursue them.
"I can totally understand it. Being deaf is such a defining part of identity, especially in this town," Beth said.
After three months of research, however, "we were very, very convinced it would be appropriate for Yolanda."
Last spring, the Santanas called their HMO, Preferred Care, and were told that children would be covered if they are between 2 and 17 years old and have a doctors referral.
Then they started calling hospitals across the state with a list of questions, including how many 2-year-olds have been given implants and how many of those implants had to be removed.
Lenox Hill Hospital in Manhattan had done more than 500 implants, hundreds more than the other hospitals. Strong Memorial Hospital did 75 to 100 implants in 15 years, almost all of them on adults.
The Santanas wanted to pursue the surgery at Lenox Hill, but a staffing shortage would have delayed Yolandas surgery, so they turned to University Hospital in Syracuse.
The timing was critical. Yolandas pediatrician said the child probably wouldnt remember the surgery if it took place before age 3. Also, 2-year-olds undergo rapid brain development in the areas of speech, hearing and language; thats why a recent American Medical Association study showed cochlear implants to be a cost-effective treatment for profound deafness.
But complications thwarted their progress. The Santanas received a letter from Preferred Care stating that it wouldnt pay for the operation. Although they had gotten approval for a consultation in Syracuse, the eager couple had not gotten the green light to schedule out-of-town surgery.
"I cried for five days," Beth said.
The Santanas then consulted a doctor at Strong, who wrote a referral for the implant to be done in Syracuse because the consultation had been performed there. They were eventually assured that their insurance would pay for the device, the surgery and follow-up care.
But they would have to fight for the coverage again, even after the surgery was performed.
By August, with the surgery a few weeks away, the Santanas faced another weighty decision. In the office of Debra Lightfoot, an audiologist at the hospital in Syracuse, the Santanas examined cochlear implant samples to decide which would be better for Yolanda.
They rubbed the implants to see how they felt and placed the magnetic transmitting coil to their head.
One model was thinner and would be placed under the scalp, requiring a small amount of drilling into the mastoid bone of the skull. A microphone resembling a hearing aid would be worn behind the ear and connected to a processor and battery pack, kept in a pocket or fanny pack.
"Shes going to break this," Carlos said of the earpiece that holds the microphone.
The other implant was more compact and had a smaller battery pack but would require deeper drilling into the skull.
"These are monumental choices," said Beth.
The Santanas chose the first model with the attached earpiece: and processor.
"Weve heard wonderful things about this," said Beth, who queried parents from the Internet support group about their experiences.
Although Carlos didnt like the idea of her wearing a device on her ear, he wanted Yolanda to have the simplest operation possible.
Once the decision was made, Lightfoot briefed the Santanas on the surgery and follow-up care.
After the operation, nothing would be done for about a month, to allow swelling to subside and the incision to heal. Only then would the device be turned on.
"Its like you have a brand new baby," she said.
On Oct. 4, Yolanda showed up at University Hospital in Syracuse at dawn, wearing a long yellow dress. She allowed her blood pressure, temperature and oxygen levels to be monitored, but fought having a plastic identification bracelet placed on her wrist.
Finally, a nurse bent down to place one on Yolandas ankle. "Watch out," Carlos warned, "we call her Thunderkicks."
Lightfoot entered the room with a gift from the implant manufacturer: a stuffed koala bear wearing a plastic cochlear implant of its own.
As Yolanda was being prepped, Dr. Charles Woods, her surgeon, mentioned that there were "still reimbursement issues." Preferred Care, he said, wanted to pay only $900 for the $21,000 device.
"Its nothing you need t worry about," he said, adding that the battle is a common one. Insurance companies routinely regard cochlear implants as hearing aids usually not covered by insurance- rather than as implanted devices akin to pacemakers, he said.
Preferred Care officials said some of the denial letters resulted from not following prior-authorization procedures. The HMO routinely pays for cochlear implants, a spokesman said, and all of Yolandas claims have now been paid.
Yolanda, meanwhile, slurped some purple liquid that made her drowsy as Lightfoot carried her away for the 3-1/2-hour, "medium-risk" operation.
Woods has perform cochlear implants for 12 years some on children as young as 14 months.
"The younger we can implant them, the better they will do," Woods said.
Of those who have had the surgery, "close to 100 percent" will benefit from the implant, he said. And among those who became deaf after learning to speak, nearly 75 percent with implants will hear well enough to communicate over the telephone.
While much depends the support and speech therapy after surgery, results are not as good with older patients who have been brought up using sign language instead of oral communication. The brain learns to process communication visually, he said.
"It might give them sound, but Im going to strongly tell them this may not give them what they think it will give them," Woods said.
In the waiting room, Carlos and Beth reflected on their decision and their expectations.
"All she does is scream because she cant get her point across," Carlos said. "Even if she says a few words, not even complete sentences, thats OK."
"If I can scream at her when shes running down the driveway and a car is coming, Id be happy," she said.
Nearly five hours later, the Santanas were allowed in the recovery room. They raced in to find Yolanda, a large bandage on the right side of her head, crying silently as she reached out to her parents.
Yolanda was wheeled into a private room, where Carlos and Beth spent the night. Beth crawled onto the hospital bed and cradled Yolandas head under her chin as she hummed softly, the vibrations lulling her to sleep.
It would be more than a month before they learned whether the surgery was a success.
TOMORROW: Yolandas implant is turned on.
How cochlear implants work
Cochlear implants, named for the part of the ear that they stimulate, allow people with severe hearing loss (beyond the help of a hearing aid) to recognize speech and environmental sounds.
Sources: Cochlear Corp.; Harper Encyclopedia of Science
(Graphic by Kelly Eagan, Staff Artist)
Beth Santana Laidlaw and Carlos Santana cradle their daughter, Yolanda, in a recovery room at University Hospital in Syracuse after cochlear implant surgery in early October.
Parents await results of surgery
At home, shes oblivious to the sounds of a noisy dinner
Yolanda resists test with a headset
Yolanda plays with an earpiece in sound booth
(Photos: Annette Lein, Staff Photographer)
Divisive implants gaining support
By Greg Livadas
Staff Writer, Democrat and Chronicle
Controversy over the cochlear implant has raged since the invention of the device nearly 20 years ago.
Some in the deaf community feel they dont need to be "fixed." They contend deaf people should be proud of who they are, embrace their deaf culture and cherish American Sign Language.
Many children who receive implants are deliberately not taught sign language so they can rely on their newly acquired hearing.
"I have no desire to get an implant," said Matthew Moore, 41, a Rochester author and publisher who was born deaf. "Its not a question of money. Im simply not interested in wiring myself up with an aid of any kind. I have a rich and satisfying life."
Even more controversial is when hearing parents decide a young deaf child should receive an implant. Moore, who plans to compile a book on the topic, said implant manufacturers have "a ready sucker market in parents of newly diagnosed deaf babies. Theyre in a state of shock."
These issues are being given a national airing in a new documentary that makes its local premiere Friday at the Little Theatre. Sound and Fury, a favorite at film festivals across the country, is a powerful and emotional depiction of a family tom apart because of implant decisions made for their deaf children.
But attitudes are slowly changing. Some people previously opposed to implants are beginning to accept them albeit with caveats.
In October, the National Association of the Deaf, one of the oldest, largest and most respected associations of the deaf in the world, rewrote its opinion.
In 1991, the group stated that implants for children were "deplorable." NAD now says implants should be viewed as tools, like hearing aids or other assistive devices, if used with proper follow-up services. But theyre not appropriate for all deaf children or adults, it says.
The NAD, based in Silver Spring, Md., also is calling for more education of health care professionals to help parents make better choices.
"Medical professionals may be experts regarding the mysteries of the inner ear, but they are not the experts regarding the inner lives of deaf children and adults;" the NAD said.
The popularity of implants has spawned two local support groups.
Parents of children with implants or those who are considering the surgery meet monthly in Pittsford. The group is so new, it doesnt have a name, said Trish Pagano, an organizer for the group.
Also new is a club for students with implants at Rochester Institute of Technologys National Technical Institute for the Deaf. Catherine Clark, an audiologist at NTID, said the club was formed to help spread information about cochlear implant services. "Were seeing an increase in people using them. And it helps them being with others who have also gone through the process:"
The students gather for social events. They also speak to other students who have questions about their implants and show "that they are not a bunch of "unhappy people," Clark said.
Democrat and Chronicle, Rochester, N.Y., Sunday, December 3, 2000
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