The sound of one boy healing
Tyler de Lara, 2, thrashes on a gurney, tangled in his sheet, hospital gown and IV tubing. A white bandage encircles his head and, loosened by his squirming, slips down and covers his eyes.
All that shows is a tuft of black hair and his mouth, set in an angry pout.
Dr. Akira Ishiyama notes Tyler’s grimace and says he’s pleased. It means there is no facial nerve damage.
Tyler was diagnosed as deaf six months earlier. Now, on an autumn morning at UCLA’s outpatient surgery center -- after several misdiagnoses, battles with insurance companies and much worry and waiting -- he is drifting from a cloud of anesthesia with two cochlear implants nestled in his skull.
His parents, Michael and Marieta, hope he can finally enter the world of those who speak and hear.
One or two of every 1,000 U.S. children are born profoundly deaf, numbers that have not changed for decades. What is changing -- at an unprecedented pace -- is the number of those children under 3 who are receiving cochlear implants, electronic devices that mimic the function of delicate cells of the inner ear.
About 40% of such children now receive a cochlear implant, up from about 25% five years ago. Medicaid and most private insurers will pay for at least one implant, and the number of deaf children who receive one or even two is projected to rise still further.
Cochlear implants have long been endorsed for adults. But studies published in the last two years have delivered what many experts say is ironclad evidence that the devices are safe in babies and toddlers and allow most children to develop spoken language without extensive occupational therapy.
“It used to be a big decision, a big, bold move,” says Efrat A. Schorr, a developmental psychologist at the University of Maryland. “It’s not anymore. It’s become the standard of care for children with profound hearing loss.”
Before implants, deaf children learned American Sign Language or lip reading. Most fared exceedingly well, although many could not speak. Like the De Laras, however, many families whose children receive implants today are dissuaded from learning sign language, a trend that will bear repercussions for the entire deaf community and that some experts fear is a mistake.
Tyler’s generation, hearing experts say, will redefine what it means to be deaf.
“I describe it as a revolution,” Schorr says. “It’s close to a miracle, what this technology has made possible.”
Designed for people who are deaf or have little hearing, cochlear implants were first developed in the 1970s. The device consists of a headset that is removable and a piece that is surgically implanted. A microphone-speech processor the size of a hearing aid is hooked over the ear to process sounds, which are then sent to a transmitter the size of a quarter that adheres to the head, just behind the ear, with a magnet.
A receiver implanted inside the skull picks up signals and sends messages to electrodes inserted inside the inner ear -- stand-ins for the tiny hair cells that, in the majority of deaf people, are damaged. The message moves on to the brain.
Tyler was to get two implants, one on each side of his head.
“We just want him to hear,” says his father, Michael, 38, a registered nurse, on an October day at the couple’s town house in Harbor City. “We want him to be independent.”
It is one week before Tyler’s surgery. The boy stands on a chair and pounds on an electric keyboard -- an activity that puzzles his parents. Marieta, 39, who quit nursing school when Tyler was diagnosed, guesses that some sliver of the racket he is making can penetrate his brain.
Ninety percent of deaf children, like Tyler, are born to hearing parents. A nationwide embrace of programs to screen newborns and flag those with hearing problems before they leave the hospital has meant such babies are identified at increasingly younger ages: at an average of two to three months, compared with 2 1/2 to 3 years in 1990.
Some, like Tyler, slip through the cracks. The results of his exam -- which came up normal -- were either erroneous or he lost his ability to hear later on.
By age 1, Tyler was still a silent child. The De Laras were suspicious that their son wasn’t hearing. His pediatrician said not to worry: Boys are usually late talkers.
One day, shortly after Tyler’s first birthday, Michael grabbed two pans and slammed them together a few feet from where his son was sitting. Tyler didn’t flinch.
An audiologist told the couple Tyler had some hearing loss and recommended aids. The couple paid $5,000 for top-of-the-line models. Tyler, almost 2 when the devices arrived, hated wearing them. One time he pulled them apart in his car seat, scattering the pieces all over the back of Marieta’s car.
“That Christmas, we were so depressed and hopeless,” Marieta says.
Then a friend told them about John Tracy Clinic in Los Angeles, which provides free services to preschool-age children with hearing loss. An examination there showed Tyler was profoundly deaf. By then, he was 2 1/2 years old. Research shows that the earlier a child receives the implant, the better his or her spoken language is by age 3 1/2 . Clinic instructors advised the De Laras that there was still time for Tyler to receive cochlear implants, if that was their choice.
At 7:30 a.m. Oct. 22, Ishiyama, Tyler’s surgeon, drops by the UCLA pre-op room to say hello to Tyler, his parents and sister, Ylana, 7.
“Are you ready?” he asks.
“Yes, I am. He is. We are,” Marieta says.
Tyler is wheeled away. The family, awake since 3 a.m., wanders off to the chapel and the cafeteria.
Shortly after noon, Ishiyama finds the family in a waiting room. Tyler, after a four-hour operation, is in recovery, his head swathed in white.
“It looks like he’s wearing a helmet,” Michael says.
Marieta bursts into tears.
She talks about what the coming weeks will be like: Healing. Turning on the implants. Starting speech therapy.
“I know it’s going to be a process, a long process,” she says. “Like starting over.”
“When I call him and he turns his head, that will be progress,” Michael says.
The devices implanted in Tyler were crafted at Advanced Bionics in Sylmar, one of three cochlear implant makers in the world. Employees in sterile clothing assemble parts of the implant with tweezers in a hermetically sealed room. They work under microscopes: An implant contains wires that are one-100th of an inch thick.
After an order arrives, the device is built for that specific client. Sometimes, families will stop by the plant to meet the technician who worked on their child’s implant. The external parts come in a rainbow of colors with accessories such as rhinestones to appeal to children. Tyler’s, for now, are plain.
It’s three weeks after surgery. The implant on Tyler’s right side is about to be turned on.
Audiologists Denise Nicholson and Shannon White lead the family into a small room with toys and child-size furniture. Nicholson hooks the microphone and speech processor over Tyler’s right ear and places a transmitter on his head.
He pulls it off.
They try to distract him with toys. Tyler shakes his head.
Nicholson plays a video of an airplane (Tyler loves airplanes). Tyler pulls the transmitter off and swats his hand toward his mother to signal “No!”
The audiologist replaces the transmitter. Michael runs his hand over Tyler’s head, massaging the scalp to distract him. He offers a new toy, and Tyler becomes engrossed in the task of dropping colored coins into slots. He stops fussing over the device. Michael massages his son’s head for the next 90 minutes.
“OK,” Nicholson says. “It’s time to turn it on.”
She tells the De Laras to speak to Tyler, “so your voices will be the first thing he hears.”
Michael: “Tyler, baby.”
Michael claps his hands.
A puzzled look crosses his face. He lowers the toy in his hand to the table and looks up at Nicholson.
Nicholson rattles a basket of toys. He doesn’t react.
His parents call his name; he doesn’t react.
He looks confused, climbs into Michael’s lap and pulls off the device.
“He’s trying to figure out, does this sound have meaning for him,” White says.
The device falls off Tyler’s head. He reaches for it and puts it back on.
About four days after both his implants were turned on, Tyler begins to wear the headsets willingly and even insists on keeping them on at night.
He stops playing with the pots and pans. His parents guess that the clanging now bothers him as much as it always did them and his sister.
He begins to show preference for certain sounds: The noise from the vacuum cleaner frightens him. The sound of a jet engine has him searching the sky. When Marieta’s cellphone rings, he looks at her expectantly.
In January, he starts speech therapy. Bye-bye comes out as “yi-yi” and oh-oh is “ah-ah.”
“We’re so happy,” Marieta says. “Every time we call his name he looks at us.”
By March, Tyler responds to his parents’ commands, such as, “Come on. We’re leaving now.” They try to stop using their hands to convey information to him.
One evening in April, the family is watching TV when one of the characters burps. Tyler begins to practice a burping sound.
He has developed a passion for music. He hums into a karaoke microphone and to the theme song of his favorite commercial, for the Toyota Prius. He bangs on his toy piano with new appreciation. He loves drums, bells and his uncle’s guitar.
‘Tyler, would you like to say hi?” asks Caroline Fuentes, Tyler’s teacher at John Tracy Clinic, on a day in May.
Tyler stands in front of a circle of children sitting on the floor in the 2- and 3-year-olds room. Tyler will attend classes at the preschool until kindergarten, when he will likely transfer to a regular school.
He grins. “Hi.”
It’s a little word, uttered softly. Angela Stokes, director of educational services at the clinic, predicts that, later this summer, words will burst forth from the 3-year-old.
Today, he is working on simple sounds. Ah. Ee. Oh. Meow, which comes out “eow,” when he says it. (“M” is a hard sound to form.) His speech therapist, Charissa Powers, covers her mouth when she makes sounds so that Tyler will learn by listening, not lip reading. They practice making sounds of things he’s interested in -- cars and animals.
Just like an infant who begins to babble at 6 months and says a few words around age 1, a child with a cochlear implant who is newly exposed to sound will first babble and later develop vocabulary.
Tyler and Powers rehearse a range of noises; then Powers rounds off the session with Tyler’s favorite, the Slippery Fish song: “Slippery fish, slippery fish. Gulp, gulp, gulp!”
He hears, smiles and hums.
The words will come.
Audio slide show: Miracle of sound
For deaf children, the development of cochlear implants has turned a silent future of sign language or lip reading into the promise of hearing.