Joyous noise - Implant lets kids join hearing world
Tribune Newspapers
By Emma Johnson
Brandon Johnson wants his mom to do something.
"What? What do you want?" Jennifer Johnson coos to her 19-month-old. His brown eyes are insistent. His chubby hands motion furiously to the bedroom hallway of his family's Mesa home.
Brandon, normally a content kid, grows frustrated and barks sounds. He does not speak. Even with a hearing aid in each ear, he cannot hear enough to learn to talk.
Hopefully that will change. Three weeks from now, a cochlear implant put in Brandon's head Tuesday will be turned on. Doctors expect that over the next year the device will enable the boy to hear, understand sound and speak.
The procedure was the first at Mesa Lutheran Hospital - the second East Valley facility to offer the treatment. The other facility is Mayo Clinic Scottsdale.
More than 35,000 deaf and partially deaf people nationwide have had cochlear implants. The procedure is so successful that hospitals are increasingly offering the service even though they rarely turn a profit.
At the same time, some in the deaf community oppose the implant's use, saying it threatens the language and culture of sign language.
Brandon was born partially deaf but was able to function with hearing aids at 60 percent hearing until his first birthday. About that time, he said his first word: "Mom" - a word with low tones that makes it easier for people with hearing and speech problems to manage.
Suddenly, Brandon's hearing ceased. He stopped speaking and became overwhelmed in trying to communicate, his mother said.
"He's always been very visual, very communicative" Johnson said. "But when he lost his hearing, he got frustrated. And he got mean."
Around the same time, Brandon's sister, Alyssa. was born, and the family learned she also had hearing problems. At 8 months, she also wears hearing aids.
Johnson's worries grew. Will other kids make fun of them? Where will they be able to work? Will they be safe? Will they be cut off from the rest of the world?
"(Alyssa) was crying the other night, and I thought, 'Will they be able to hear their babies cry?' " she said.
These concerns have led thousands of parents such as Jennifer and Kenny Johnson to get cochlear implants for their children as early as a year old.
Because Brandon is so young and the language portion of his brain is still developing, he is expected to grow up to have normal verbal skills.
People over age 15 are only rarely approved as candidates for cochlear implants because the device would produce only bothersome noise, not meaningful sounds, said Dr. Michael Fucci, the hearing specialist who performed Brandon's implant.
Existing cochlear implant services at hospitals are expanding by 20 percent per year, and new services are opening at an accelerated rate, said Paula Byhrkopp, a cochlear implant audiologist with Mayo Clinic Scottsdale. Health insurance often reimburses far less than the $60,000 to $70,000 required for the surgery, implant and speech therapy, and hospitals absorb tens of thousands of dollars per procedure, she said.
The programs are growing because it is good business, Fucci said. Hospitals can recoup some of the costs by selling hearing aids and other services generated by good publicity about the implants, he said.
"There are also the ethical issues and the ushie-gushie stuff: seeing a kid hear his parents voice for the first time, or know that he'll be able to speak," he said.
But many people in the deaf community resent the invention, which implies the deaf are "somehow broken and need to be fixed," said Tim Creagan, public policy director for Self Help for Hard of Hearing People Inc., a national advocacy group for people with hearing problems.
"The deaf community has a long history of accomplishment, and their own language they feel very comfortable with," he said. "They don't see the need to interact in the hearing world."
But advocates for the device say if an implant is an option, it should be done.
Courtney Gallien, 7, got her implant when she was 2. Today she speaks without impediment and attends mainstream second grade and after-school dance class. There is no doubt in the mind of the Ahwatukee Foothills girl or her mother, Yvonne, that it has improved her life.
"I've given her every opportunity," Yvonne Gallien said. Safety is less of an issue for her daughter who "can hear a cricket chirp."
"She's now a normal functioning child, self-reliant and more independent."
With the help of a speech therapist, Jennifer Johnson and her son have been learning American Sign Language. If the implant does not work, he will rely on ASL for the rest of his life. Brandon can sign up to 10 words, but no one else in the family signs.
"I realized that if he just (used) sign (language), it would just be me and him," Johnson said. "He lives in a hearing world.
Gift of hearing
Twenty-month-old Brandon Johnson was quietly playing with his toy train when he suddenly snapped his head around. The look in his eyes seemed to ask: "What happened?"
The Mesa boy turned to his father, who was videotaping the child. He glanced at his 9-month-old sister, who offered no answers.
"I think he hears it," said his mother, Jennifer.
"It" was a computer-generated buzzing noise pumped into the brown-haired boy's head via a small plastic disk attached behind his right ear. "It" was the first sound he has ever heard.
The holiday gift of sound was made possible by a cochlear implant the boy received last month at Mesa Lutheran Hospital, the latest East Valley facility to offer the procedure. On Tuesday, an external component to the implant was attached - and the ability to hear became possible.
Brandon joins about 35,000 deaf and partially deaf people nationwide who have had cochlear implants.
The number of such surgeries, which have had remarkable success, has jumped about 20 percent each year in recent years, said Paula Byhrkopp, a cochlear implant audiologist with Mayo Clinic Scottsdale.
"From what I understand, the implant is always successful," said Brandon's father, Kenny, before Tuesday's appointment. "It's just a matter of how successful. My biggest concern is that he won't be able to speak normally. My wife is concerned he'll be made fun of."
The device is expected to last a lifetime and allow Brandon to learn to speak normally.
Over the next year, Brandon will grow accustomed to the relationships between movement and noise, and sound and words. As he progresses, his parents, using a control pack, will be able to gradually increase the volume and quality of sound their son hears.
"You're starting a great journey," said Arlie Adam during Tuesday's test. Adam is a clinical specialist who represents the manufacturer of Brandon's implant and has worked with hearing-impaired children for 15 years.
But, as is expected with the implant, the journey started with an overwhelmed patient.
Soon after being able to hear, Brandon was forced to contend with the voices of three auditory professionals, two parents, two journalists and a gurgling baby sister - not to mention his own voice.
The normally confident toddler who befriends strangers and conquers unfamiliar places curled up in his mother's lap. He rubbed his head against his mom's chest, causing the external component to come off. He reached for stuffed animals to hold while he fussed and wept in fear.
"It's OK, it's OK to hear," Jennifer Johnson said as she stroked his hair and reconnected the device.
He began to settle down. He babbled, paused and calmed himself. He babbled again. He appeared to contemplate how his own moving vocal cords corresponded with a reverberation in his brain.
Already a verbal child, Brandon displays all signs of excellent language potential.
Certified auditory verbal therapist Sharon McKarns will work with the toddler and his family, helping his verbal language catch up to other kids his age. Most 20-month-olds know between 400 and 500 words, she said. Brandon knows a handful of sign language signs.
"His family will have to provide a language-rich environment for him," McKarns said. That means for the next couple of years, they will talk to him constantly, verbalizing every object, action and activity in Brandon's midst.
"Other parents have the luxury to allow their children to learn language," audiologist Betty Jane Hoade said.
The past months have been an emotional roller coaster for Jennifer and Kenny Johnson. They had to decide whether to put their son through the trauma of surgery and years of therapy in order to hear.
"It's hard when you hear people talking to their kids, saying 'I love you,'" Kenny Johnson said. "We want him to grow up with every opportunity."
By the time the family left, Brandon was asleep on his mother's shoulder. The couple were discussing when they could embark on the implant journey for their 9-month-old daughter, Alyssa, who also is deaf.
© Tribune Newspapers/Emma Johnson