Published on HamptonRoads.com | PilotOnline.com (http://hamptonroads.com)
Initiative helps parents of children with hearing problems

Missy Colley was crushed when she learned that her newborn daughter, Emma, was profoundly deaf.

The Virginia Beach woman remembered all the time she had spent with earphones on her stomach during the pregnancy, hoping her baby heard classical musical.

"All of that kind of gets taken away. I started thinking, 'She hasn't heard me tell her I love her. She hasn't heard the lullabies we've played for her.' "

Emma failed her newborn hearing screening at birth.

Colley and her husband, Chris, were told to bring Emma back three months later for an auditory brain response, a more comprehensive hearing test. That test confirmed the earlier diagnosis.

"You're sent home with all this stuff, but nobody really to talk to," Colley said.

That's one of the reasons why the couple became area guides in the state's Guide By Your Side program. The initiative, launched in late 2006, provides free support to the parents of newly diagnosed hearing-impaired children.

According to Dana Yarbrough, who directs the state program, Virginia is one of a dozen states to operate Guide By Your Side.

Last year, the group matched 81 families to guides throughout the state. The guides are parents of deaf or hard-of-hearing children and are trained to be knowledgeable about the treatment options for families.

The Colleys help Hampton Roads residents. Yarbrough estimates about 16 percent of Guide By Your Side families are in this area.

After learning of her own daughter's hearing impairment, the Colleyes lamented the news for a few days. Then they began the long process of informing themselves about Emma's options.

Eventually, they decided she'd have the six-hour surgery to receive cochlear implants, during which an electronic device is pu t into the inner ear to help with certain types of deafness. Emma and, later, her younger brother, Luke, underwent the surgery twice.

Today, both children are thriving.

Luke, 3, recently started working with a speech therapist. Both children talk a lot, and Emma has become so adept that, aside from her implants, most people can't tell she has a hearing impairment, Colley said.

The youngster attends kindergarten at Alanton Elementary School, where she has an Individual Education Plan and a teacher, who works with the hearing impaired, comes in at least weekly to see if Emma is deficient in any area, said Colley, an instructional behavior specialist with Norfolk Public Schools.

Although the couple's children are adapting well to their circumstances, Colley said the initial news was startling. Neither she or her husband are hearing impaired, nor do they have any family history of the condition.

Statistics show that more than 90 percent of deaf children are born to hearing parents.

Cochlear implants were a good option for Emma and Luke, but other options are available. They include hearing aids, lip reading, sign language, cued speech and implants.

The best alternative is different for everyone, Colley said.

"The point of Guide By Your Side is it's everyone's choice. The purpose is to have your child speak. You can't really make a decision until you know exactly what you're dealing with," she added.

That's the scenario Bayview resident Leslie Dunbar and her husband, Chris, face. Their son, Christian, was recently diagnosed with a unilateral hearing loss.

"He failed the newborn screening in one ear," Dunbar said of her 7-month-old. So far, his right ear is fine, but the audiologist told Dunbar that could change, and that Christian could eventually lose hearing in that ear, too.

Learning about Christian's hearing loss was an isolating experience for the couple, "so it was a comfort to talk to Missy," Dunbar said. "You're all alone in it until someone gets involved and says, 'I'm here with you.' "

Early intervention is key, Dunbar said, because children with hearing loss have more speech issues and, occasionally, behavioral issues.

The Dunbars are considering what treatment options are best for Christian.

Melinda Stanton's son, Kove Byrd, was also a bit of puzzle until he was 18 months old. That's when the toddler was finally diagnosed as having a bilateral hearing loss. He was born in North Carolina and failed his newborn hearing screening there. Later, during a follow-up appointment with an audiologist after the family moved to New York, he was diagnosed as only having fluid on the ears. Some doctors even theorized that the boy was autistic.

When Stanton watches home videos of her so n taken before his diagnosis, she can't help but get a little misty. On the footage, Stanton would call his name, but he would never look in her direction, seemingly ignoring her.

"They took two years of communication away from him," Stanton said. "Now we have to start fresh. He lost all that time, so that at four months after he turns 2, he's going to hear for the first time."

These days, Kove gets frustrated when he tries to communicate to his mother. Mostly, he points to try and convey his meaning.

But this should change soon.

Last month, his bilateral implants were activated for the first time. A few weeks ago marked the first time the toddler heard sound.

Initially, Stanton was concerned about the surgery but felt better after talking to Colley about her concerns.

"When I talked to her, I knew my son would have a chance to hear like other children were hearing," Stanton said. "I couldn't pass it up."

 

Rita Frankenberry, 222-5102 or

rita.frankenberry@pilotonline.com


Source URL (retrieved on 07/06/2008 - 00:30): http://hamptonroads.com/2008/03/initiative-helps-parents-children-hearing-problems