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Olivia and Tallulah Hogan are used to attention. After all, the 13-month-old, blue-eyed, red-cheeked twins are adorable.
They're also deaf. And it was for that reason that they got their first taste of national media attention Aug. 2 when camera operators and reporters from ABC, NBC, CBS, FOX, San Jose Mercury News and the San Francisco Examiner piled into the small research room at the California Ear Institute in East Palo Alto. They watched, along with family members, technology at its best--the twins could hear.
But after the cameramen and reporters got their stories, parents of the Los Gatos twins, Lynley and Jim Hogan, had to create a new, unfamiliar routine--a life with cochlear implants.
Born deaf
When Lynley learned that her identical newborn twins were deaf, she was heartbroken.
"When I first found out, I knew nothing about hearing. In the beginning, I was devastated. I very quickly learned about it," she said.
The twins were tested because of a mandated California newborn hearing screening test.
"I am so thankful for the test. If we would not have found out that early, we only would have been that much further from them being able to hear," she said.
While the twins' grandmother, Bonn Fenchel, was convinced that the girls could hear before the implants, Lynley just rolled her eyes at her mom's comment.
"Can they see your hands moving?" Lynley asked her mother.
Maybe, Bonn said, but it looks like they're listening.
To cope with the disappointment about the girls' situation, Lynley, with the help of friends and family members, started researching deafness, hearing aids and new technology.
The girls were taken to Valley Medical Center, and later to Stanford to get a second opinion. At Stanford, she was told the girls were profoundly deaf, but could hear for about one second.
They then were sent to the California Ear Institute, where surgeon Joseph Roberson recommended that the girls have bilateral cochlear implants.
In the process, a small device is surgically implanted behind each ear, and the outer devices--microphones about the size of a quarter and half an inch thick--magnetically snap into place. Each microphone is attached to a device about as big as a tape recorder, and these are held in a vest.
The girls were scheduled to go through the surgery and activation almost three months ago, but because of an insurance hold-up, they had to wait.
"It was still considered experimental in babies prior to 13 months old," Lynley said.
Once the insurance money was approved--Lynley's insurance covers 90 percent of the cost, which is up to $110,000 for each ear--the surgery was scheduled for July 11, and the activation for Aug. 2 and Aug. 5.
Before the activation
A day before the activation, Lynley was very nervous.
And the girls? They were just hyper.
As toys were being thrown around, Lynley said she expected changes to be significant, and quick. While she was unsure about what to expect, and nervous about whether it would work, she was also very excited.
"I'll be able to read and sing to them, like I do with Lynley Kate," Lynley said, referring to the twins' 3-year-old sister. "I'll be able to call them by name, and teach them who they are, and who I am."
She'll also be able to leave the room and the girls won't cry because they'll be able to hear their mom in the house.
"It's just going to be night and day," she said.
Most importantly, the girls will have bright futures.
Lynley said she expected a change in character from Tallulah, who has always been outgoing and rambunctious. About five months ago, however, her personality shifted, and Lynley thinks she began drawing inward in a silent world.
Lynley Kate, the big sister, affectionately kissed Olivia and Tallulah on the head the day before the surgery. Following their big sister's lead, they jumped on the couch, giggling, and disobeying their mother.
As they played, Lynley said she was also nervous about the activation because Olivia fell on her ear earlier that morning, landing directly where the device is located.
The activation days
Despite Olivia's fall, the activation went as scheduled.
As their support crew tagged along--grandma Bonn, her fiancée Helmut Jaki, grandpa Lon Fenchel, uncle Ryan Fenchel and, of course, Lynley and Lynley Kate--the activation was a success.
"They had very normal, healthy responses," said Lisa Tonokawa, audiologist and director of the cochlear implant program, after the activation. At times, when a sound would be activated by the computer, they would look up at the cameras, thinking the noise was coming from the cameramen or photographers.
Though it was an exciting day for the family, it was also emotional for Lynley, who began tearing up as she described how the devices will change their lives.
On Friday, they returned to East Palo Alto, and Tonokawa turned their devices up to 40 decibels.
"A normal conversation is at 50 decibels," Lynley said. They will be turned up again when they are used to the sound, she added. Again, it was a success.
"Both girls were very, very good about leaving the devices on," Tonokawa said.
Unfortunately for Lynley, that habit has not continued after the activation appointments.
Chaos begins
On Aug. 8, six days after the first activation, Lynley spent a rare couple of hours alone with Olivia. Tullulah and Lynley Kate were taking a nap as Olivia and her mom played in the living room.
With the radio playing in the background, Lynley talked to Olivia, calling her name, pronouncing it slowly, and carefully enunciating each letter.
"Ooo-livvv-i-aaaa," she said to her.
Sometimes, her eyes would light up and she would giggle. Other times, Olivia had an agenda of her own--find a way out of her mom's sight.
As Lynley would race from the living room to the kitchen, bringing Olivia back to the living room, her daughter would at times throw tantrums.
"She's the drama queen," Lynley said with a smile.
Each time Olivia would throw her head back during a tantrum, one or both of her hearing devices would fall off, initiating a subtle, repetitious beeping to let Lynley know.
"I can hear beeping in my ears now," Lynley said.
Since the devices were activated, Lynley has been running around, trying to keep them connected at all times.
And while the twins seem to recognize that when they don't have the devices connected they can't hear, they are not necessarily always the ones pulling them off.
While Lynley changes her daughters' diapers--in an assembly line fashion--the devices fall off. When the girls are sitting in high chairs, the devices fall off. When they are put to sleep, the devices fall off.
"It's during these times I want to sing and talk to them, but I'm finding that it's more important to have the microphones on during quality time," Lynley said.
Bonn, Lynley's mother, said that the other day, they all took a walk to Jazz in the Plazz, with the twins in strollers.
"We had put each microphone on probably six times per ear," Bonn said.
On another outing, Lynley took the girls to church. "They beeped throughout the whole service. The priest came up to me at the end and said, 'I thought it was my microphone beeping,' " Lynley said. "It is a full- time job," she added.
While Lynley has been chasing the girls around by herself for most of the time, she has had one helper.
"Lynley Kate is in training," she said. Lynley said that while Lynley Kate is still apprehensive about the devices, and does not touch them when they fall, she will tell her mom when one is dislocated.
"She'll tell me, 'Mommy, cochlear device off,' " Lynley said.
Although it will still take several months before the girls will be able to identify words, their names, who is talking and learn how to ignore unimportant sounds, such as cars driving by, Bonn said she can already see a difference in their behavior.
"The are babbling to each other now, almost like they are conversing," Bonn said.
Other than more talking and listening, it is business as usual for the twins and their big sister--keeping mom on her toes.
And until the girls can learn how to keep the devices on at all times, they might be getting more attention than they want.
LOS GATOS TWINS ARE ABLE TO HEAR,THANKS TO BILA IMPLANTS
Olivia and Talullah Hogan, 13-month-old twins from Los Gatos, are experiencing the gift of hearing thanks to bilateral cochlear implants.
The implants are small electronic devices that bypass the damaged parts of the ear to restore hearing in deaf children and adults. While cochlear implants have been available for about 20 years, only recently have they been used for both ears, said Toni Arnold, the vice president of auditory marketing for Advanced Bionics Corporation.
The thinking, Arnold explained before the twins' activation Aug. 2, is, like hearing aids, two is better than one.
"Hearing aids in both ears have proven to be better than in one ear, and we believe that two cochlear implants will also be better than one on many levels," said Joseph Roberson, the surgeon who implanted the twins' cochlear implants on July 11.
Olivia and Talullah are only the second set of identical twins under the age of 2 to have received bilateral cochlear implants. The other set of twins received implants last December in Illinois. The 8-month-old twins were born deaf, and it was Advanced Bionics Corporation that designed the microelectronic devices that allowed them to hear. The Hogan twins received the same type of electronic device.
By implanting the devices at a younger age, the children will have a better chance of communicating just like any other child would.
With a small device surgically implanted behind each ear--there are only inch-long scars and tiny bumps that prove it--the outer devices magnetically snap into place.
The outer devices, which are microphones about the size of a quarter and about a half inch thick, are attached to a device about as big as a tape recorder. These are held in a vest.
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