This is story of our daughters Taylor and Lauren, both with profound hearing loss, and the journey of getting and utilizing cochlear implants. Both have congenital deafness due to the Connexin 26 gene mutation.
Monday, June 8, 2009
Our daughter is deaf?!?!
Taylor, Born June 4, 2008. 6 pounds, 11 oz. She was welcomed into this world by an older brother, Derek, age 17 months. Derek didn't pass his newborn hearing screening when he was born. At the follow-up exam when he was one-month old, he passed... whew, no more worries for the new parents. By the time Taylor was born, Derek was talking away. When Taylor didn't pass her newborn hearing screening, we weren't concerned. After all, the same thing had happened with Derek, 17 months earlier. No family history of deafness.
Taylor proceeded to amaze us with how fast she progressed; she was very attentive early on, smiling early, laughing whole-heartedly at her brother by 3 months old... She has the most magical laugh. I hope it doesn't change once she can "hear" with the cochlear implants. Taylor was ahead of the milestones on physical development, across the board. She started walking at just over 10 months. She was also so very social and in tune with everyone in her environment.
As her parents, we started to get concerned at around 8 months when we noticed that her babbling wasn't changing. She made raspberries noises, and would cough or smack her lips in imitation of us, but there weren't any word-like pronunciations such as mama, dada, baba, etc. We made an appointment to get her hearing re-tested by an audiologist at 11 months. She again did not pass the OAE exam. The audiologist suggested that we wait another two months and see if we could tell if she understood any words that we said, regardless of what Taylor was speaking to us. She just didn't think that Taylor acted like a deaf child. (More on that later...) At that point, my husband and I were very seriously concerned, and we realized that whether she had a hearing problem or not wasn't something that we were going to wait another two months on... 13 months! No way. We made an appointment with an ENT to analyze Taylor further. Her ears appeared to be in excellent condition. He again said the same thing as the audiologist had -- she didn't act like a deaf child. Hmmm. This is a child with no history of ear infections or fevers; she has never even had a cold. He referred us to a center in Wichita for further testing of her hearing. We called to immediately schedule an appointment, but it was almost a month for them to get us in.
June 8, 2009 was the day. We had our ABR test. In babies, the most effective way to test their hearing is to conduct an Auditory Brainstem Response test. Basically, they put the child to sleep with anesthesia, emit sounds to the ears and test for brainwaves. Prior to the test, two audiologists observed Taylor and how she interacted with them, toys, stuffed animals, and cell phones. Again, one of the audiolgists commented to us that it appeared Taylor had heard something she said. Well, the results of the test were simple: No brain waves shown at any point, at any decibel level. She is profoundly deaf.
Labels:
cochlear implants,
congenital deafness,
connexin 26
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