Twins slowly emerge from silence
Published 12:00 am Thursday, November 25, 1999
After five years in total silence, twins Matthew and Morgan Smith heard some of their first sounds – crunching potato chips in Matthew’s mouth and an ice machine at a local McDonald’s restaurant.
Those sounds were possible because of an expensive device called a cochlear implant.
When Morgan and Matthew Smith were born on Oct. 16, 1994 to Charles G. Smith, III and Tonya Clary, they seemed healthy except for slight prematurity.
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Months later when they still weren’t sitting up, the twins from Kingston were diagnosed with Usher’s Syndrome, which caused progressive hearing loss in both children.
&uot;We were told that it could also lead to blindness in adulthood,&uot; Clary said.
The children saw a specialist — a retinologist in Baton Rouge, La. — who found the pigment that coupled with the hearing loss characterizes Usher’s Syndrome.
From that time on, Clary began her search for a treatment for her children. It was through that search that she heard of The Shea Clinic in Memphis, Tenn.
The twins’ physician, Dr. Bruce Fetterman of the Shea Clinic, examined the twins and determined that cochlear implants were the children’s only hope to hear and to eventually speak.
&uot;The cochlear implant was the only option for these children,&uot; Fetterman said.
The portion of the cochlear implant that is surgically implanted behind the ear, Fetterman said, stimulates the hearing nerve directly. An outer device is worn to sort the auditory messages and feed them back to the brain.
On June 18, each child received one implant – Matthew and Morgan both received the implant in their left ear – at a cost of $33,862.70 per ear.
Fetterman said that one implant per child is the routine method of inserting cochlear implants.
&uot;They’re experimenting in Europe with putting implants in both ears, but one implant has been the norm,&uot; Fetterman said.
Now the insurance company that covers the children has denied their medical claim – putting the family in financial hardship.
&uot;We’ve been trying to get the surgery done since they were one,&uot; Clary said.
Surgery was only the beginning for the active preschoolers.
&uot;They go to speech therapy three times a week and occupational therapy twice a week,&uot; Clary said.
Therapy helps the children adapt to the cochlear implants and hearing sounds for the first time.
&uot;We were told turning on the implants for them would be like being in a deep sleep and a very loud alarm coming on,&uot; Clary said.
Fetterman compares the sudden influx of auditory stimulus to being raised on a quiet farm and finding yourself instantly plunked down in the heart of New York City.
&uot;They’ve had to learn what sound is and where it’s coming from,&uot; Clary said.
Some of the first sounds the children heard when their implants were switched on were commonplace sounds that were brand new for them.
They both heard traffic noise for the first time.
While the experience was encouraging for their future, it was frightening to the children at first, Clary said.
&uot;The first time they heard their own voices it really scared them,&uot; she said.
The intrusion of this noise into the children’s previously silent world has been upsetting for them, Clary said.
&uot;There’s been a lot of frustration and anger,&uot; she said. &uot;It’s caused a sensory disorder – they got to a point where they didn’t even like the feel of their clothes touching them.&uot;
Occupational therapy is helping the children overcome the newly acquired sensory disorder, and Matthew takes a small dose of anti-depressant to help him cope with these uncomfortable sensations. So far, Morgan seems to be the most eager to explore the new world of sound.
&uot;Morgan is trying more to talk,&uot; Clary said. But Matthew has been experimenting in his own way.
&uot;Matthew turns the radio way up,&uot; Clary said.