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When baby cannot hear

February 9, 2007

A family was at a loss when they learned their little daughter was deaf.

February 9, 2007

WILLIAMSBURG — Tatia Granger remembers being “shell shocked” when she first learned her daughter couldn’t hear.

Granger and her husband first began to suspect Rheis didn’t hear normally months before. But still, when the doctor told them their 13-month-old girl had “permanent, profound hearing loss,” they weren’t sure how to react.

“I said to her, ‘Do you mean she’s deaf?'” Granger said. “It just didn’t register at first that my child couldn’t hear and would never hear. It’s fair to say we were probably in denial. We didn’t

expect it. We didn’t have any reason to expect it.”

Granger isn’t alone. Hearing loss is considered one of the most common birth defects, according to the March of Dimes. Ninety percent of the children born with hearing loss are born to parents who can hear.

Which is why Granger said she is grateful their doctor got the family in touch with another couple with a deaf child. “It was very helpful to get a parent’s perspective,” she said.

And she doesn’t want other parents to go through it alone either.

“I felt like, if I could do that for somebody else, I would really like to do that,” Granger said.

She is one of the first 15 parents to join the Virginia Department of Health’s new Guide by Your Side program, which pairs parents of deaf or hard of hearing children with parents who have just learned their child has hearing problems.

“What we have heard on more than one occasion is that these parents many times feel lost,” said Pat Dewey, head of the health department’s Early Education Detection and Intervention Program.

At the same time, new treatments that give sound to the deaf have sparked emotional debates and controversy, with hearing parents of deaf children often seeking to give their children sound while the deaf community says it is robbing these children of their deaf culture.

Which is why Dewey said guides have been trained to give unbiased information about the wide variety of treatments for hearing loss, which can include learning sign language, fitting the child for hearing aids when they’re as young as 3 months old, or surgery to repair a malformed ear or stimulate hearing.

“That personal contact is so important,” Dewey said.

Granger hasn’t yet met with her first parent. But she already knows what she plans to say.

“I’m going to tell them, your child is fine, and you and your family will be fine,” Granger said.

She’ll also tell them to be patient, that no decision is going to be a quick fix. And not to feel guilty.

“I did,” she said, adding they do not know what caused Rheis, now 22 months old, to lose her hearing. “In the end, my husband and I said it doesn’t matter how it happened. What matters is what we do for her.”

Unlike the Grangers, who didn’t learn about their daughter’s hearing problems until she was a year old, most parents will get the diagnosis before leaving the hospital with their newborn. Since 2000, state law has required that all newborns’ hearing be tested.

Rheis passed that first hearing test, but by 9 months old didn’t turn her head toward sounds and even slept while workers used jackhammers to break up concrete right outside her window.

The couple’s other daughter, 5-year-old Rhyan, has normal hearing.

Studies show that children with hearing loss can be delayed in language and cognitive development. But those delays can be prevented or reduced through early detection and treatment.

The Grangers decided that the best treatment for Rheis would be a cochlear implant, a small device that bypasses the damaged portions of the ear and instead sends sound impulses directly to the auditory nerve.

In November 2006, a surgeon placed a receiver and stimulator under Rheis’ scalp to convert sounds into electronic impulses and send them through an internal cable to an array of electrodes wound through the auditory branch of the inner ear. Doctors also fitted Rheis with a device that sits behind her ear and picks up sound, processes it and transmits it into her ear.

The implant doesn’t actually restore hearing, but instead gives the recipient auditory signals and makes it possible for them to understand speech and to communicate.

Last month doctors turned on Rheis’ implant, first bringing sounds into her head. Today she has weekly speech therapy sessions and is beginning to make sounds that will eventually become words.

“I just want her first word to be ‘mama,'” Granger said.