Michelle knows firsthand the challenges and issues faced by individuals and families impacted by hearing loss. She is deaf. And her daughter Ellie is deaf. But, through bi-lateral cochlear implants, both have received the gift of hearing.
CIAF provides the support Michelle wishes she had when facing important decisions concerning cochlear implant technology. Through our continuing research and connections to the medical community and cochlear implant manufacturers, CIAF is an important resource for those encountering the challenges of hearing loss and seeking new opportunities.
Michelle explains, “While every individual’s journey to hearing is unique, there is a great deal we can learn from each other and the hearing care industry. CIAF combines these collective experiences and information so individuals and families can make informed decisions while never feeling alone.”
CIAF hopes to create lasting change by bringing hope to the thousands of people across the world experiencing hearing loss.
In March of 1998, after experiencing a complicated pregnancy and 16 weeks of bed rest, Ellie was born seven weeks prematurely. She spent 10 days in the special care nursery before coming home with an apnea monitor and a wallaby light used to treat jaundice. Besides these minor complications, doctors said Ellie was progressing wonderfully. During the time Ellie was in the special care nursery, I requested a hearing exam for her. (I have a sensory neural hearing loss and was concerned that she could also be hearing impaired.) Unfortunately, my request was never followed up on and Ellie was sent home without receiving a hearing examination.
Once Ellie was home, I carefully watched for her responses to sound. Neither the doorbell, the vacuum, nor the ringing of the telephone appeared to bother her. I expressed my concerns to her pediatrician, my husband, Joel, my mother and other family members. Everyone believed I was over reacting. Finally, after two months of closely watching Ellie's lack of response to my voice and other environmental sounds, I decided to have an audiologist perform a hearing test on her. Several hearing examinations later, the audiologist informed me that Ellie had a moderate hearing loss and should be fitted with hearing aids. I digested the information and decided to seek a second opinion, as I felt that she had been misdiagnosed. In my view, Ellie had little or no response to sound, which would not equate to a "moderate" hearing loss.
I scheduled an appointment with Carle Clinic's ECHO (Expanding Children's Hearing Opportunities) program in Champaign, Illinois after weeks of researching organizations that test young babies for hearing impairment. Ellie was diagnosed as profoundly deaf in both ears after undergoing numerous sound field hearing exams and ABR (auditory brainstem response) exams. Although my motherly instincts kept telling me something was wrong, I was not prepared when Ellie was diagnosed as profoundly deaf. The news was horrifying. Being hearing impaired myself, I was acutely aware of the difficulties and challenges that awaited Ellie. Raised orally, I had learned to read lips and was able to communicate with everyone around me. I had learned to accommodate for hearing loss, although this had not been easy.
At that point, Ellie was fitted with hearing aids in the hope that she would be able to receive adequate amplification to allow her to hear sounds and speech. Unfortunately, fitting a young baby with hearing aids is not a simple process. Ear molds must constantly be replaced as the child grows. It seemed as though every time Ellie grew into a new shoe size she needed new ear molds as well. In addition to the struggle of fitting Ellie with hearing aids, there was also a tremendous struggle to evaluate whether the hearing aids were actually benefiting her. Ellie received weekly hearing examinations and worked with three speech therapists to determine whether she was hearing with the help of the aids. Additionally, we traveled to New Orleans to meet with Dr. Charles Berlin, a widely recognized hearing specialist. After evaluating Ellie's hearing, he had the same diagnosis as Carle Clinic. However, Dr. Berlin believed that Ellie had a strange genetic loss – one that he had never seen in his thirty years of practice. DNA samples of Ellie, my husband and I were evaluated by Dr. Broyna Keats, professor and acting director at the Center for Molecular and Human Genetics. It seemed there could be a correlation between my hearing loss, Ellie's hearing loss, and my complicated pregnancy.
My pregnancy was complicated by the fact that I have a septate uterus, which makes it extremely difficult to carry a pregnancy to term. One remedy for this complication is complete bed rest. During the time that I was confined to my bed, I began researching the complications associated with a septate uterus. Ironically, I found that almost every woman with whom I spoke over the Internet also had a hearing loss similar to mine, or had children who had hearing losses. Some believed that I have a rare genetic problem that has been passed on to my daughter. We anxiously awaited the DNA results from Dr. Keats. The test results came back inconclusive after three long months of hoping for some answers. Unfortunately, no one was ever able to determine why Ellie was born deaf.
After eight long and tiresome months, Ellie's doctors, speech therapist and audiologist collectively determined that Ellie was not benefiting from the high powered hearing aids as they would have hoped. Throughout the entire process, I was researching the possibility of a cochlear implant for Ellie. During the two-hour surgery, a surgeon drills into the mastoid bone behind the ear and implants a quarter sized device known as a cochlear implant. This electronic device bypasses the damaged parts of the ear, sending electronic sound signals to the brain. All of the doctors and the audiologist who worked with Ellie believed that she would was a possible candidate for the implant. However, with a young baby, it takes months of assessment before this determination can be made. Ellie was approved as a candidate for the cochlear implant in August of 1999. Needless to say, we were extremely excited about this. It was our hope that the implant would give Ellie the ability to hear at a level that would allow her to learn how to speak- something that would never be a possibility with the hearing aids. We understood that the implant would enable Ellie to receive sound, but that would be just the beginning of a very long journey. We were told she would need extensive training and therapy to interpret sounds and then translate them to speech. At that point in time, there had only been a handful of children Ellie's age (16 months) who had received the implant.
While Joel and I were excited about this option available to Ellie, we were also very scared. It took a lot of time to research the implant. We read tons of books, talked to many parents of children with the implant, spoke to several doctors, and consulted with deaf individuals to get their opinions. It took us a long time to come to a decision. Some individuals did extremely well with the implant, while others didn’t respond well at all. We finally decided that we really didn’t have much to lose: if Ellie didn’t get the implant, she would never hear and probably would never be capable of intelligible speech. If she got the implant, she would probably be able to hear almost everything and learn how to speak. Since our family and friends can all hear and communicate through speech, we wanted to give Ellie every opportunity to do so as well. If the implant was not a success, we would then decide what route to take, whether it be signing, cued speech, the School for the Deaf, etc. So we decided to move forward and hope for the best.
At 6:00 a.m. on August 24, 1999, Ellie was taken to Carle Clinic, one of the largest implant centers in the nation, to have the implant surgery. The surgery was performed by Dr. Michael Novak. He is a wonderfully compassionate man with a great deal of experience fitting children with the cochlear implant. We fully trusted Dr. Novak and handed Ellie over to him. After three grueling hours in the waiting room, Dr. Novak finally appeared with a smile on his face. Joel and I immediately felt a sense of relief. He informed us that the surgery had gone extremely well and seemed to be a success, based on initial tests. Of course, the true test would come once Ellie was hooked-up to sound.
We were allowed to see Ellie once she was in the recovery room. Nothing could have prepared Joel and I for what we were about to see. Ellie lay in the hospital crib with a huge bandage around her head, crying as she slept. We instantly felt a wave of nausea. Had we done the right thing? We elected to put our daughter through this trauma. How could we have done that?
After about an hour, Ellie began to awake from the sedation. While she was not chipper, she was responsive to Joel and me. She just wanted to be held. The nurses gave us our instructions, the pain medication for Ellie, and sent us on our way. On the way home, Joel and I cried. While we knew in our hearts that we had made the right decision, it was still traumatic to see our daughter in such pain. Ellie slept during the entire 2 hour drive home. As we pulled into the drive, Ellie began to wake-up—with a smile on her face. We carefully brought her inside, and before we reached the living room, she was crying because she wanted down. She immediately went to her toys and began to play. Joel and I stood in amazement as we watched her pick up a baby doll and give it a kiss. We thought, wait a minute—this child has just had a three hour surgery, yet she is acting fine! We couldn’t believe our eyes. Ellie didn't need any pain medication because once she was in her own environment, she was completely fine and never cried. It was so amazing.
The next day we removed the bandage from her head. Although I have a very strong stomach, I was sick when I saw the nine inch incision in her head. I couldn’t bring my self to touch it. So I called a very good friend of mine who is a nurse, and she came over and washed Ellie’s hair for me. As the days passed, I became more comfortable with the wound, and could clean and wash it.
On September 23rd, after a month of healing, we were ready for the big day. Ellie would be hooked-up to sound for the very first time. We journeyed back over to Carle Clinic with my parents, my sister, Joel’s parents and Joel’s aunt and uncle. Anxiously awaiting the hook-up, we all stood around biting our nails and looking at each other.
Ellie was greeted by Dr. Novak and two audiologists, Dianne and Lee Ann. The atmosphere was loaded with high expectations. Novak did his best to tone down the expectation a bit. "Some kids seem to respond right away and some don’t," he said gently.
The audiologists plugged in a wire to their laptop. The other end went into Ellie’s microprocessor. With everything hooked-up, Lee Ann pushed a key on the laptop which generated a pulse that caused an electrode in Ellie’s implant to fire off. Instantly, Ellie looked up.
"Yes, that’s good. Beep, beep, beep," said Lee Ann, while signing to Ellie. Ellie returned to her playing. Each time Lee Ann stimulated one of the electrodes in the implant, Ellie froze and looked directly at her. Lee Ann was watching her intently for signs that Ellie was hearing. For close to an hour, Lee Ann generated a series of pulses, stimulating electrodes at different frequencies, while recording the results.
For all the technology involved, it was a subtle process; one that relied heavily upon the observations and skills of Lee Ann and Dianne. Both watched Ellie carefully to see if she heard anything, all the while not trying to give away too many cues as to what they were looking for. Together, they had hooked-up more than 130 children to cochlear implants. They had seen all kinds of initial reactions.
Lee Ann informed us that Ellie had done well during the testing. Joel and I stared at each other in amazement. We had waited so long for that moment!
Once the initial testing was done, Lee Ann hooked-up Ellie’s implant to the microphone. From this point forward, there were no more computer-generated tones. The sounds Ellie heard were the sounds of life going on around her; the sounds of our voices.
We were told that if the microprocessor was too loud at first, it would scare Ellie. Dianne was right! Ellie began to cry. Dianne quickly engaged in a game with Ellie while they lowered the volume on the processor.
I can clearly remember the first time I called Ellie’s name and waited for her response: she didn’t even look up. Dianne reassured me that no child had ever responded to their name on the day of hook-up.
Gradually, Ellie adjusted to the sounds of the outside world. Dr. Novak, Dianne and Lee Ann informed us we would have to adjust the volume upward on her processor when she became acclimated to hearing.
Joel and I stood looking at each other. We realized that we had a very long road ahead of us. Ellie was way behind her peers in learning spoken language, even though she already knew more than 30 words in sign language. We understood that for the next couple of years, we would have to journey to Carle Clinic so that Ellie could continue to be tested and receive therapy.
After much testing on that wonderful day, we left the clinic and went for lunch with the family. On our way home, Joel and I cried again. But this time our tears were of happiness, not sorrow.
The road to hearing has been a long but rewarding one. Shortly after Ellie was hooked-up, we enrolled her in pre-school so that she could learn how to socialize with her hearing peers. This experience helped ease the transition from being deaf to hearing. It also helped to facilitate the learning of age-appropriate speech and language skills. Because she had been deaf for almost the first two years of her life, Ellie tended to play alone. She didn’t know how to interact with other children her age. Ellie would now face two challenges; learning to listen and speak, and learning appropriate socialization skills. Joel and I both recognized that in order for Ellie to get the skills she needed to flourish, she would have to be around other children her age. I knew this, but I had a hard time enrolling her in a day care program because I was a stay-at-home mom and had devoted all of my time and effort to Ellie over the past two years. However, it didn’t take long to see how much Ellie benefited from her new environment.
Ellie is currently 8 years old and will attend 3rd grade in the fall. She is functioning at an age appropriate grade level and we couldn’t be more excited about this. If you consider Ellie didn’t hear for the first 2 years of her life and didn’t begin speaking until she was 4 years old – this is pretty amazing. Ellie’s social skills have increased dramatically since the start of her school career. Ellie is friends to all that she comes in contact with. Simply, Ellie LOVES school and can’t wait to ride the bus each day!
While school is difficult for Ellie, she does extremely well. Ellie receives extra help throughout her school day and attends speech, language, listening, lip reading and sign language therapy five days per week to help her continue to thrive and stay at an age appropriate grade level. Each of Ellie’s teachers wear a microphone to ensure that Ellie can clearly understand the curriculum and what is being taught.
We work with Ellie on a daily basis at home as well. Spelling is difficult for Ellie but she is a perfectionist and won’t quit until she can spell all her words correctly. To say that Ellie is a very determined little girl would be an understatement.
Each summer, we hire private tutors for Ellie to ensure that she continues to make gains. This has been extremely helpful and also a necessity in order for Ellie to make strides. If you meet Ellie and didn’t know her story, you would never know she was born deaf or is hearing impaired. Ellie’s speech and lip reading skills are impeccable.
Ellie is quite an amazing child who has overcome so many obstacles in such a short time. When you look at her, you can’t help but smile. She is truly a beautiful child with an extraordinary personality. Ellie loves her implant so much that it is the first thing she wants in the morning and the last thing she takes off at night. Before we leave the house, Ellie always makes sure that she has an extra battery, just in case her battery goes dead. She loves to hear and never wants to be without her implant. And yes, Ellie can hear dogs bark, birds chirps, horns honk, and the "Hokey Pokey" song. She can hear us say, "I Love You," but doesn't need to because she knows it.
Ellie’s story is that of a true miracle. Oh, and the journey through Holland, though not where we wanted to go, has been the most wonderful experience of our lives.