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March 11, 2005

Sound leader

From: Megan Hopkins - Mar 11, 2005

Sound leader


March 2 2005

WILLIAMSBURG -- Like many kids her age, Madalyn Hopkins doesn't like going to bed. But Madalyn has an extra reason: Every night, she has to take off the equipment that allows her to hear. Profoundly deaf in both ears, the 5-year-old falls asleep in a world of silence.

She asks for a nightlight so at least she can see. As soon as she wakes up, she wants to "turn on her ears." "She wants both of them on all the time," said Megan Hopkins, Madalyn's mother. "She is talking more and more. It seems to me like she changes every day."

Madalyn isn't just changing herself. She's helping to change the scope of treatment for deaf children.

While children have used the same hearing devices as Madalyn - called cochlear implants - for more than 15 years, the Williamsburg girl was among the first in the country to have surgery done on both ears. Doctors hope the double, or "bilateral," implants will help her localize sounds, pick up speech in noisy environments and distinguish between similar words such as "call" and "ball."

With the jury still out on whether the long-term benefits will be enough to justify a second surgery, Madalyn's progress over the past year is turning heads.

One of those heads belongs to her surgeon, Dr. Barry Strasnick of Eastern Virginia Medical School. Strasnick, an expert on cochlear implants, at first hesitated to do another operation on

Madalyn. But since her surgery in late January 2004, he has operated on two more children with good results. Bilateral implants are especially promising for young kids because the first five years of life are crucial to language development, he said. "To be honest, I've been surprised by how well they've all done," he said. "So far, it really does look like two is better than one."

Cochlear implants don't cure deafness. Instead, they convert sounds into a series of electrical pulses that the brain can interpret. An external microphone worn behind the ear picks up noises and a speech processor creates the pulses, which travel through a wire to the inner ear, or cochlea, and along the auditory nerve to the brain.

About 13,000 adults and 10,000 children in the United States have cochlear implants. Their ears are too badly damaged for hearing aids, which only turn up the volume on sounds. The implants aren't perfect either. Sounds can be slightly mechanical and some people hear echoes. Still, many children do well enough to go to regular schools, talk on the phone and be understood easily in conversations. Success rates have climbed as doctors operate at earlier ages - when a child is 1 or 2, rather than 6 or 7.

Cochlear implants also aren't free of controversy. Some parents believe the best way to teach self-pride in hearing-impaired children is to immerse them in a rich deaf culture that revolves around sign language. They also want to avoid an invasive operation that can cost more than $40,000. For the Hopkins family, though, the choice was clear. Madalyn and her twin brother, Jarrett, were born about 10 weeks premature and weighed a little more than three pounds each, but they grew quickly and passed a wide range of health tests - including newborn hearing screens.

As the babies grew into toddlers, Megan Hopkins and her husband, Paul, began to worry. Madalyn was a happy child who liked to dance and run, her sandy-brown hair flapping in a ponytail and her blue eyes shining. But she said only one word, "Mama." Unlike Jarrett, she didn't answer to her name. Doctors said twins could be slower to develop speech, but the Hopkinses pushed for another hearing test after the children turned 2.

The results were terrible: Jarrett had moderate hearing loss in one ear and severe loss in the other, and Madalyn was profoundly deaf in both ears. No one knows what happened - whether the twins had an inherited disorder, a mysterious infection or something else - or when their hearing began to fail. Hearing aids could help Jarrett, but not Madalyn. Her parents, both teachers, hated seeing their daughter struggle to keep up with the brother she'd beaten into the world by a minute.

Madalyn got her first cochlear implant in the summer of 2002, in her left ear. She bounced back quickly from the three-hour operation. Overwhelmed at first by all the noise once the implant was activated, she began talking more within a month, thrived in speech therapy and fell in love with music.

It was wonderful, but it wasn't quite enough. Madalyn had trouble pinpointing the direction of sounds. She could tell a car was approaching but didn't know from where. She could hear her parents calling but had to search the house to find them.

After learning bilateral implants had helped children in Europe, Megan Hopkins was sure Madalyn should have another operation. She wanted her daughter to hear more normally and also have a "back-up ear" if one of her implants ran out of batteries or failed completely.

Her husband wasn't so sure. Beyond the risks of surgery, Paul Hopkins worried better medical technology would come along - such as ear drops to re-grow sensory cells - and Madalyn wouldn't qualify. Strasnick had the same concern, but both men also knew the clock was ticking.

"Her mom's argument was, 'I need to worry about helping her keep up today, not what might or might not happen,' Strasnick said. "I couldn't argue with that."

So with a green light from their health insurance company, the Hopkinses and their doctor dove into unfamiliar territory, making Madalyn one of about 80 children in the country with two implants. After another adjustment period, her hearing has become noticeably better, Paul Hopkins said. "I yell from one side of the house and she knows what room I'm in," he said. "It has eased frustrations for all of us."

Megan Hopkins isn't sure how much to credit the implants or Madalyn's growing maturity, but her daughter has moved from one-word statements to three and four word sentences. "She especially likes to boss her brother around," Megan Hopkins said, smiling.

Madalyn hasn't totally caught up with other kids her age. She has trouble with words that sound alike and doesn't pronounce every letter of some words. She also tends to drop certain words from sentences, such as saying "in bag" instead of "in the bag."

Still, Madalyn has made great progress, said Liz Abeyounis, a speech therapist with Children's Hospital of the King's Daughters who has worked with her since July. She is about at the level of a 31/2- or 4-year-old, Abeyounis said, which is remarkable considering she likely didn't hear much during her first two years of life. At a recent session, Madalyn - dressed all in pink and full of smiles - identified animals, listened to a story, answered questions and turned toward sounds such as a crinkling paper bag. "Whatever it is that is making this happen," Abeyounis said, "it is definitely working."

Madalyn is doing well in Stonehouse Elementary School's Bright Beginnings program, which mixes special needs students with students who have no disabilities. She takes karate and likes learning to read and write. At home, she has turned into a serious ham, belting out songs from Disney movies. For surgeons, the next step likely will be operating on both ears in a single surgery, Strasnick said. "I really believe that's the direction we're heading," he said, "especially with more hearing problems diagnosed early."

And Madalyn - the little performer who wants to burn the midnight oil - is leading the way.

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