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Testimonials

The Anderson Family | The Grimm Family | The Parrish Family

Surfing the Web with Laney Jane
By The Anderson family

October 16, 1998 was the most amazing day of our lives. We had our first child, Laney Jane. We were relieved to see she had all her fingers and toes and no physical malformations. Her Apgar scores were excellent. We were blessed with this “perfect” baby. All of the big worries that we usually read, see, or hear about (Down’s Syndrome, Spina Bifida, etc.) vanished from our conscience.

Of all the numerous problems we worried about throughout pregnancy, deafness never crossed our minds. Laney was very lucky to have been born at South Georgia Medical Center in Valdosta, GA, a hospital that conducted newborn hearing screenings. They informed us on the day we were leaving the hospital that Laney had failed her hearing test, but not to worry since many infants fail the first time due to the newness of the test and the chance of vernix build-up in her ears from birth. We really didn’t worry at all. Our nephew had been born there two months earlier and had failed also, but passed at his second testing.

We were referred to Babies Can’t Wait and six weeks later Laney was tested again with the same results. We were still told not to worry. However, after a third failed testing another six weeks later, the worrying set in. We began doing our own testing at home— clapping, banging pots, and slamming doors behind Laney’s back. She was very tricky, because there were times we were convinced she was responding, but later learned that her extraordinary sense of sight was the reason. After further testing and a visit to the neurologist, we were told that our three month old had a bilateral, severe-to-profound hearing loss.

The roller coaster of emotions was overwhelming: anger, confusion, sadness, denial. At the time, we knew of no options except hearing aids and sign language. However, after discovering the miracle of the cochlear implant and visiting the Auditory-Verbal Center, our emotions began to settle in a positive way. I remember the wonderful feeling of peace that came over me when I finally saw hope for Laney that she would one day hear and speak. I thank God for that. It is that search for hope and peace that led my husband, Lane, to construct a website about Laney and our journey as parents of a deaf child, http://www.laneyjane.com. The sole purpose of the website is to be of help to those parents of deaf children searching for options and information. We have included surgery pictures, audio clips of speech progress and other various pieces of information. We hope to document Laney’s continued progress indefinitely into the future in order to give others access to the progress that can be achieved with a cochlear implant and Auditory-Verbal therapy.

We have been overwhelmed with the interest in our site in just the short few months since its creation. We have had over a thousand visitors from six different countries and eighteen different states. We believe this is testament to the ever-growing belief that with a cochlear implant and Auditory-Verbal therapy, deaf children can learn to listen and speak. Since receiving the implant at nineteen months of age, Laney has blossomed into a lively, babbling two-year old. It is a marvelous feeling to see a light at the end of the tunnel. And it gets brighter and brighter everyday!

There is Always Hope
by Bud Grimm

Our oldest daughter, Caitlin, was born on the 8th of November 1994. We knew from that very first minute that we would not have the “perfect” little girl we had dreamed of. Caitlin was born with a severe unilateral cleft lip and palate and was in critical condition. Caitlin spent the next two months in the NICU ward at Egelston fighting for her life. By the time that she was one month old, Caitlin had four major surgeries to correct heart, lung, stomach, and throat problems. The doctors continued to find additional problems as the days went on. Because of antibiotics Caitlan had taken for a serious blood infection, she had developed a severe-to-profound bilateral sensor neural hearing loss. Cyndy and I were crushed. After everything that Caitlin had endured during her hospital stay, this was one last slap in the face.

Caitlin’s doctors were baffled by her case. It was not known if Caitlin would ever walk, talk, see or have mental disabilities. My wife Cyndy intensively researched on a little known syndrome called CHARGE. Each letter represented a different anomaly, and Caitlin had every one. Cyndy shared the information with doctors and after some time Caitlin was ultimately diagnosed.

Cyndy applied that same tenacity in reading everything she could find on deafness. We didn’t feel that sign language was a pursuable option. We wanted Caitlin to be able to hear and speak. We spoke with a representative from Georgia PINES who thought Caitlin probably would never speak and the sooner we started sign language, the better.

Through our county’s Early Intervention Program, we heard about a place called The Auditory-Verbal Center. After meeting with the therapist and observing other children, we enrolled Caitlin in the program and fitted her with hearing aids at four months of age. We knew that it was going to be a long, hard road, but we also knew that this was the approach that could offer Caitlin the greatest potential benefits in the long run. We were cautioned about expecting too much because Caitlin had so many other problems to deal with. Caitlin slowly, but steadily, made progress. On her first birthday, our cat Simon, strolled past Caitlin’s highchair. Caitlin looked down, pointed at Simon, and said, “Meow.” This was her first word and we all had a good cry.

Over the next four years, Caitlin continued to make progress, while at the same time baffling all of her therapists. In 2000, Caitlin was considered a candidate for a cochlear implant. We knew this would offer Caitlin the greatest hope to hear, but this would also be her 20th surgery. After careful discussion, we decided to go with the implant.

Caitlin was very excited and would tell everyone she knew that she was going to get an “ear implant” so that she could hear. Cyndy asked Caitlin what was the first sound she wanted to hear after her implant was turned on and she said, “I want to hear the cars going vroom vroom, wind blowing in the trees, rain in a puddle, and a baby crying.”

The surgery went perfectly. After a couple weeks, we went to have Caitlin’s implant turned on. We were all nervous, but on the way out of the hospital, she looked around quickly, grabbed my wrist, and put my watch to her implant. When I asked her what she heard, she said, “Tic toc, tic toc.” I knelt down, held her in my arms, and cried. We spent the rest of the day listening to the wind, thunderstorms, and birds singing on some CDs that my mother had sent.

It has been several months since Caitlin’s implant was turned on. We have witnessed many wondrous things that before we could have only dreamed about. Caitlin roams around the house listening to all her new sounds asking us, “Hey, what’s that sound?” Socially she has blossomed, and she has become more interested in her surroundings. Her speech clarity and comprehension have increased dramatically. We can finally have a conversation with our daughter, and know that she will not be spending the rest of her life in silence.

Our Struggle with Insurance Companies
by the Parrish Family

When we first found out that our oldest son, Jared, was deaf, we set out to understand all of the options available to us. We were initially told that we needed to purchase hearing aids and to learn sign language. We trusted the professionals to lead us in the right direction, and it seemed appropriate because all I had ever seen deaf people do was to use sign language. However, I remembered that the former Miss America, Heather Whitestone, was deaf. However, I was told she was a special exception and could hear better than a deaf person could.

We struggled with education issues and accepted the fact that those very expensive hearing aids were not doing him much good. The first time I heard of the cochlear implant was while reading a magazine in a doctor’s office. I asked our audiologists about it and was told that it was for the “deafest of the deaf,” and that Jared had a small amount of residual hearing. Plus, I would have to travel a minimum of 3-4 hours to an implant center for the evaluation and surgery. I guess they assumed that because the mapping took many weeks that it would be too difficult to manage. Believe me, I remember my response well, “I would blast off in a rocket every morning and fly to the moon and back each day if it would help my son hear better.” They obviously did not know me very well.

When we finally met with the pediatric ENT who did implant surgeries, he gave us a lot of encouragement, and began to file the needed paperwork to get the ball rolling with our insurance company. In the meantime I began meeting other children and adults with cochlear implants. It was amazing to see what they were capable of. The adults with late onset of hearing loss were the greatest source of hope. They knew what it was like to hear normally and loved their cochlear implants.

Our insurance carrier, a local HMO affiliated with Blue Cross and Blue Shield, gave us a resounding “no” to our request. We were devastated. I set out right away to find out why they refused to pay while BCBS of Florida was currently paying for clients to have the implant surgery. I was told that it was not listed in the coverage section of their plan. They would never agree to the surgery because four patients had previously requested the same thing, and it would not be cost effective to start now because more would start asking for this very expensive procedure. Well, I decided not to take “no” for an answer. I began my formal appeal in writing. The request was denied. I contacted an attorney who told me it would be an impossible task to get them to agree to something that was plainly listed as an exclusion. We were seriously considering raising the money to pay for the surgery ourselves when our second child was born, and was also diagnosed with the exact same hearing loss. We were sure that even if we raised the money to pay for one, it would take many years to pay for a second. How could we offer such an advantage to Jared and not to Jordan?

Because of the responsibility in raising a second hearing-impaired child, we got sidetracked for a few months. I continued to write letters, and stay in touch with the surgeon. They suggested I contact one of the cochlear implant companies. We decided on The Cochlear Corporation’s Nucleus 22, which was all that was available at the time. The representative mentioned that the insurance company paid for other implantable devices such as pacemakers, retinas, and orthopedic devices. They also covered prosthetic devices like limbs and ambulation equipment. She also mentioned that they had changed their list of coverage for other things in the past based on new research.

I contacted the attorney I had previously spoken with, and asked if I could use his name in the letter I planned to write. After hearing my plan, he agreed and said he’d be happy to represent us in the event this went to court. My letter began by pointing out the safety issues of being a deaf child. Some hearing would make crossing the street and eventually driving a car safer. I told them that it didn’t seem fair that Medicaid paid for cochlear implants and other insurers paid for similar procedures. I pointed out that the underprivileged were getting this wonderful advancement while the middle class family, which we felt we were, could only sit back and watch. I mentioned the implantable and prosthetic devices the representative told me about. I closed with the fact that by telling us they would not pay for cochlear implants for my children, they were discriminating against deaf children. We felt that it was discrimination due to the cost of the procedure and follow-up and that was cause for a class action lawsuit. I knew that the very word discrimination was frightening to many companies.

Two days after I sent my letter by certified mail, I got a call from the HMO. They would agree to pay for the surgery, the initial external equipment and the surgeon’s fees. They also agreed to pay for the initial mapping, which could take up to six months. That was all I had ever wanted to begin with. Jared was implanted four months later and Jordan got his the month he turned 18 months old (18 months was required by the manufacturer at the time). I have since heard that 12 other patients in our old HMO have now received cochlear implants. I don’t know about them, but it’s been the best investment of time and money our family has ever spent.