When the nonprofit support group Sound Connection met October 13 at Himmel Park for a Halloween costume party, founder Jean Palacio realized that she and her daughter had come a long way, and not just from their former home in Dallas.
Jean's daughter was 4 months old when she contracted meningitis, leaving her deaf. "She went from being 4 months old to almost 4 years old with absolutely no language whatsoever," Jean said. "She did not know how to express her feelings, and had all these bottled up feelings inside of her."
Jean and her husband decided to investigate hearing devices for their daughter, and in the end decided on a cochlear implant. "It was a personal choice," Jean admits, "but we felt our daughter would be able to achieve more with the ability to speak versus having to depend on sign language."
Jean was well aware of the controversy surrounding the procedure; the implant is an affront to members of the deaf community who see deafness as a culture, not as a handicap. They regard cochlear implants as another misguided attempt to "cure" deafness, a threat to their community's coherence and integrity in much the same way lip-reading is.
But to those who want to hear, cochlear implants are remarkably effective. Deafness is usually a problem not with the auditory nerve, but with the inner ear, meaning more than 95 percent of deaf people can be helped to some degree by cochlear implants. A device can be surgically inserted into the cochlea, then a receiver can be implanted directly under the skin. A microphone and speech processor can be placed over the receiver, carrying the signal to the device that stimulates the auditory nerve.
An explanation of the mechanics of a cochlear implant isn't enough to quell a parent's apprehensions. So, full of fear and doubt as to whether they were making the right decision, Jean and her husband took their not-yet 4-year-old daughter to the University of Dallas for surgery. "We didn't have any relatives or anyone there with us," said Jean.
Compensating for the family's lack of a support system, a mother whose child had had a cochlear implant showed up at the hospital and stayed with Jean and her husband the whole time. "I thought, wow, that took so much of the stress and tension away to have that support and knowing that we were doing the right thing," Jean said.
That is when Jean decided to form a support group to help the parents of children with hearing aids or cochlear implants. Jean arranged monthly activities so that children with implants and hearing aids could socialize and see that there are other kids in the same situation. The group was also formed to support parents, offering someone to go with them to the hospital if they decided to get a cochlear implant for their child.
Then, two years ago, Jean moved to Tucson, and her daughter almost immediately started asking, "When are you going to start another group, Mom? I want to be able to go to meetings like we did in Dallas." Only rarely, explained Jean, does her daughter see anyone with implants at school.
With the arrival of Dr. Glenn Green, Tucson's first and only doctor to perform cochlear implants, Jean's support group should get larger. Previously cochlear implant patients would have to go to the Mayo Clinic in Scottsdale.
For example, if Jean's daughter needed servicing on her speech processor, the external portion of her cochlear implant, it would mean an hour-and-a-half drive to the Mayo Clinic and an hour and a half back, plus the visit itself. "You're talking half a day," bemoaned Jean.
Also, if a child were undergoing a cochlear implantation, a family could be looking at three weeks of hotel bills until the child would be sufficiently healed for the external hearing component.
But now Tucson has Green, a head and neck surgeon who has worked with cochlear implants since 1988. He has been performing cochlear implants at the University of Arizona Medical School since July 2000 on people from one year old to 80 or more.
Enter Merriam Memon. Merriam and her family moved to Tucson from a small mountain town near Globe, because her husband was awarded a fellowship at the UA. Her husband heard about Green and their daughter, Ayesha, became one of his first patients.
Ayesha previously had a hearing aid, but, explained Merriam, "we were not getting results ... some sounds she missed out on."
Now Ayesha is more dependent on her hearing than on lip-reading, and she is more motivated to hear. "A lot of times with the hearing aids she would say, 'I don't want it on. I'm tired.' But with the [cochlear implant], when the batteries go dead, she's upset ... she doesn't want to miss out on sound."