After years of silence, sisters are enjoying small sounds of life
By Phyllis Moore
Published in News on September 15, 2010 1:46 PM
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News-Argus/MICHAEL K. DAKOTA
Sisters Jennifer Bedsole, left, and Mandy Taylor show off their personal programmers -- the remotes that adjust the volume and settings for the middle ear implant they each have. The device allows them to hear sounds they previously missed.
For Jennifer Bedsole and Mandy Taylor, hearing the din of a busy household is a victory.
The sisters, who both received middle ear implants, are now able to hear those everyday sounds most people take for granted, but that, for years, meant nothing but silence to them.
"The sounds that we got most excited about are the little sounds, like hearing the dog's fingernails on the floor or when you pour soda into a cup and you hear the fizzing," Mrs. Bedsole said.
"These are things you couldn't hear prior to the implant," her sister said. "The first week or so (after the surgery) was rough, so many sounds that you haven't heard, it was amplified and having three kids made it louder."
But even though it has been a bit hard to adjust to her new sound-filled world, Mrs. Taylor said she had missed out on a lot -- the good, bad and the chance to be a better parent.
Now, when her middle child has migraines and stomach migraines that make her sick in the middle of the night, she is the one who can comfort her.
"It would happen during the night, and I couldn't hear her. My husband would have to do it," she said.
In the five years since Mrs. Bedsole received her Esteem device, she has had little trouble.
But the device is a machine, she said, and it runs on batteries. If the batteries die, so, too, does her ability to hear -- a fact she was reminded of when she was seven months pregnant with her first child.
"The battery was said at the time to last up to four years, and it had been three for me," she said. With little warning, the day before she and her husband, Steven, were slated to leave for a Myrtle Beach vacation, the dreaded "double-beep" alerted her the device's battery would soon be dead.
"I cried for hours because not only did it mean that I was now deaf, the day before our belated honeymoon that we never had, but because I was pregnant they wouldn't be able to put me under anesthesia to replace the battery," she said. "I was going to have to wait until after I had the baby and recovered."
As a first-time mom, she recalled being terrified at the thought of going through the experience in silence.
"How was I going to be able to hear what they were telling me in the delivery room? How was I going to hear her when she cried? It was very depressing, but I got through it with the help of my husband and family," she said.
Mrs. Taylor, of Mount Olive, had the surgery in 2008. She called it an "incredible experience."
"My personal favorite thing to do is sit outside -- the cars, the birds, the bugs that make a really loud screeching noise ... and you know the rain? I could never hear the rain when it hits the roof," she said. "It's just been a lot of different sounds, like when I do laundry and pull my daughter's dresses apart, hearing the static electricity."
The device comes with a personal programmer, or remote. Along with adjusting the volume, it has three different programs -- for one-on-one conversations, everyday use and for restaurants and situations where background noise can be blocked out.
Since the women's hearing loss is hereditary, something they have had from birth, they also know it could be passed on to their children.
Both of Mrs. Bedsole's daughters have been tested, the oldest, who is now 2, has a mild hearing loss. Tests for the baby, who is 6 months old, so far are inconclusive.
Only one of Mrs. Taylor's three daughters seems to be at risk -- her 8-year-old wears a hearing aid -- while the 6- and 10-year-olds have experienced no problems.
The sisters' journey toward hearing restoration began in 2005, when Mrs. Taylor learned about a clinical trial.
As part of a four-year FDA study, about 60 qualifying candidates would be chosen as test cases from the U.S. and Germany, based on their range of hearing loss.
"I was the fifth one in the country to get one," said Mrs. Bedsole, who was 19 at the time.
Things have worked out well for the siblings, but not so much for their dad, Jeff, who still has hearing difficulties. That seems to be typical for those who are older and have suffered hearing loss longer, the women said.
Mrs. Taylor, 32, said her husband Marty appreciates being able to better communicate with his wife.
"He's definitely enjoyed it because pre-implant our favorite words were 'huh' or 'what?', so he doesn't have to repeat himself over and over," she said. "Before, (Jennifer and I) had to have somebody stand directly in front of us so we could lip read."
When word of the clinical trials first came up, though, Mrs. Taylor said her husband was "adamantly against it," but only out of concern for her.
"You put your hearing at risk when you only have so much to begin with," she explained.
Growing up, the sisters had both worn hearing devices.
"I wish I could have had (the implant) in high school. I wish I could re-do that," said Mrs. Bedsole, a 2003 graduate of Eastern Wayne.
Mrs. Taylor was raised in a different household, attending North Duplin High School.
But each can still remember the challenges of being unable to hear peers walking behind them in the hallways, talking behind their backs and how much was missed because classmates mistakenly thought they were "stuck up."
This whole experience, though, has brought the women closer together, they say. And it's given them both more confidence.
"It's definitely been life-changing," Mrs. Bedsole said. "I feel like it's given me my life back. I don't have to worry about being hearing-impaired any more. .... I just feel normal.
"I definitely try things now that I wouldn't have before because I don't have to worry about that anymore."
"One of the big things about being hearing-impaired, a lot of times you just tune out because you can't understand," Mrs. Taylor said. "We find now we're a little more outgoing and active, (and) participate in conversations.
"I work as a substitute, a peer tutor in school, for kindergarten and first grade. I don't have to struggle to communicate with them and I have the confidence to go back to school."
Next month, she will become a full-time student at Mount Olive College, where she plans to obtain an associate degree and hopefully then a degree in early childhood education.
Mrs. Bedsole said she would like to pursue a similar path. She previously took online courses for medical transcription, thinking it would allow her to work from home. With more confidence in her hearing ability, she says she might eventually return to school once her children are older.
In the meantime, they still have annual doctor visits in Greensboro to make sure everything about the device is working well.
"We have had some of the people post our implant test scores," Mrs. Taylor said, explaining that prior to the surgery, she was categorized with a moderate to profound hearing loss and now scores at a normal to moderate hearing loss.
"With speech discrimination -- that's when you sit in a room and repeat back what they say -- before it was 52 percent and now it's 88 percent," she said.
"I don't know what mine was before I had the implants but now it's close to perfect," Mrs. Bedsole said. "It's in the 90s (percentile)."
They have also recorded testimonials for Envoy and in December 2009, Mrs. Taylor traveled to Washington D.C. to testify in front of the Federal Food and Drug Administration.
"They actually put all the data together to see if it should be approved," she said. The device received FDA approval in February.
With that rite of passage, the women remain optimistic about what it could mean in the future.
"Now that it's been approved, we can get another, a bilateral one for the other ear," Mrs. Bedsole said. "That's my dream right now to get another one because I feel like with another one, I would be complete. Being able to hear normally in one ear, you're still missing something."
Mrs. Taylor, who wears a hearing aid in her other ear, said the cost factor remains an issue.
"It's pricey for us -- right now it's $30,000, but some insurances are beginning to pick it up," she said.
"If I could afford it, I would get it. For $30,000, you can get a car. This is worth so much more," Mrs. Bedsole said.
For information on the device, Mrs. Taylor maintains a blog on their experiences. The address is already gone78.livejournal.com.