Clear78° FULL FORECASTClear78° FULL FORECAST
Make us your home page
Instagram

Parents who want their deaf children to hear form support group to discuss cochlear implants

David Mbiad holds 7-month-old Seth McCall, a friend’s son who has profound hearing loss, at a support group for parents of children who have cochlear implants or who may be getting them.

MELISSA LYTTLE | Times

David Mbiad holds 7-month-old Seth McCall, a friend’s son who has profound hearing loss, at a support group for parents of children who have cochlear implants or who may be getting them.

PALM HARBOR

Our group needs a name, Randy Campbell tells the other parents. They have been meeting for four months, in the upstairs playroom at St. Alfred's Episcopal Church, sharing bagels and coffee and hopes for their children.

"If we want other families to know we're here, we need a name," says Campbell, the church's youth minister. "Any suggestions?" The other parents all shake their heads.

Before them, on the rug, their toddlers play.

Seth, who is 7 months old, is the youngest. He's propped in an exer-saucer, spinning a rattle. His hearing aids are baby blue. "The flesh-colored ones make him look like an old man," says his mom.

Avery, 13 months, sports a hot pink processor strapped to her purple dress.

Jillian is the oldest at 2. A pink bow adorns her fine, strawberry-blond hair, tied above two round magnets affixed to the back of her head.

Campbell's son, Aiden, just had his first birthday — and his first surgery. A slim red crescent curves behind his right ear. "Oh my gosh, his scar looks awesome!" says another dad, bending over the baby. "When does he get activated?"

• • •

When Aiden was born, a doctor said he failed the hearing test in his right ear. It could be fluid, the doctor said. So Aiden's parents didn't worry.

Three weeks later, they took him to an audiologist. "He was in there for more than two hours," Campbell says. "You could tell she wanted so badly to get something, any reaction."

But there was no response in either ear.

"When we first found out about Aiden, we were lost. We didn't know anyone who was deaf," says Campbell's wife, Jenny, a 39-year-old pharmacist. "We didn't know what to do."

• • •

You can raise Aiden as a deaf child, the audiologist told them. Or you can see if he's a candidate for cochlear implants.

"For what?" Jenny Campbell asked.

Suddenly, they were thrown a lifeline. A way to help their deaf child learn to hear.

But there was so much to understand about the surgery, the devices, the risks and rewards. Should you implant your baby when he's a year old? Or wait until he's older? Should you do one ear? Or both?

When the device is finally turned on, what will the world sound like to a child who has only known silence?

"Everyone we knew, when they heard Aiden was deaf, they would say they were sorry," Randy Campbell says. "We didn't want people to be sorry. We just wanted to know how to help him. And to do that, we needed to be around other parents going through this, too."

They gave Aiden's doctors and therapists their e-mail address. If you find any other families out there who want to talk, they said, tell them to get in touch.

• • •

"So we still need a name," Campbell reminds the group, an hour into the meeting.

Four families have driven in from East Lake and Oldsmar, from Palm Harbor and Tarpon Springs. Most met through All Children's Hospital in St. Petersburg. They share the same surgeon, audiologists and speech therapist.

They all share a goal: They want their deaf children to hear.

On the floor of the church playroom, Jenny Campbell is feeding Aiden noodles. Jillian's mom is changing her daughter's diaper. And Avery is pointing at Seth's blue hearing aid, then at her own ear.

"Yes, you have new ones, don't you? He'll get some big ones like yours soon," says Avery's mom, Debe Copeland. "Can you say hi to Seth?" she asks. "Say hi."

A month after Avery had her implant activated, her mom swears she is starting to say hi.

Jillian says hi and bye, says her mom, Andrea Szenderski. She beams at the other parents. "And she's just started saying Mama."

Jenny Campbell swivels, her eyes wide. "She says Mama? How long did it take her to say Mama?"

"For my child, it took almost a year."

Jenny's head drops. She runs one finger along Aiden's moon-shaped scar. His processor won't even be turned on for three weeks. "A year?" she whispers. "Another whole year?"

• • •

They talk about surgery: Once the swelling goes down, you'll be able to feel the magnet in his head.

About devices: Ear molds stay on better than the ones that clip onto their clothes.

About fears and frustrations and finances: What if, after all this, it doesn't work? How do you get a baby to 130 doctor appointments in a year? Will insurance pay?

"We got the bill for Avery's, and I thought it said $10,000," her mom says. "It was $100,000."

But how do you put a price on giving your child a chance to hear?

Aiden's mom wants her son to know the sound of rain drumming the roof, the happy bark of his pug, Buddy, the thrill of a doorbell. She wants him to hear his big brother calling, "Good night!" She hopes, more than anything, to hear his voice.

Jenny Campbell can share those hopes here — only here. She knows everyone here understands.

Here, she doesn't have to explain. Here, no one ever says they're sorry. Here, no one talks about what is lost.

Three hours after they got to the church playroom, Avery's mom suddenly stands up and shouts, "I got it!" Even the babies look up. "The name for our group: Here We Are.

"Or, better yet: Hear We Are."

Lane DeGregory can be reached at degregory@sptimes.com or (727) 893-8848.

. MORE INFO

Cochlear implants

Cochlear implants allow people with severe hearing loss to perceive sound. The device overcomes damage to tiny nerve fibers that line the cochlea by stimulating the remaining healthy nerves.

A microphone behind the patient's ear captures sound, then a speech processor filters and digitizes the sound. A transmitter sends the digital signals to the surgically implanted receiver. The receiver converts the signals to electric impulses. And an electrode array picks up the impulses and stimulates remaining healthy nerve fibers, which send the sound information to the brain.

In the past 20 years, more than 40,000 people around the world have gotten cochlear implants. In 1990, the Food and Drug Administration approved the device for children as young as 12 months.

To learn more about cochlear implants, contact Shelly Dolan-Ash at All Children's Hospital at (727) 767-8989 or ashs@allkids.org.

Or go to www.cochlear.com.

If you go

The new support group Hear We Are will meet at 2:30 p.m. Saturday in the playroom at St. Alfred's Episcopal Church, 1601 Curlew Road, Palm Harbor. The meeting is free and open to parents of deaf or hearing-impaired children. Child care is available on-site.

For more information, e-mail Randy Campbell at randy.stalfreds@gmail.com.

Parents who want their deaf children to hear form support group to discuss cochlear implants 03/21/09 [Last modified: Saturday, March 21, 2009 4:31am]
Photo reprints | Article reprints

© 2014 Tampa Bay Times

    

Join the discussion: Click to view comments, add yours

Loading...