Our little Chloe was born Dec. 19th everything seemed perfect. She was sick alot being born in the winter I know was hard on her and she seemed to catch everything. She started getting lots of ear infections. When she was around 2yrs old, we felt like her speech was not where it should be. Everything else with her seemed to be normal. We were able to start a program with Chloe called early intervention we had a speech therapist come to our home twice a month. Her speech therapist felt like she needed to have her hearing tested at the school. We had a hard time getting accurate hearing tests because she had constant infections. After not being able to get accurate hearing tests and all the ear infections we were finally able to get into a good ENT Dr. we got tubes for her. When we went to the Dr. for a follow-up appt. for the tubes we saw an audiologist, who even after her ears were clear was not able to get a accurate hearing test so he recommended doing a sedated ABR. The sedated ABR showed no response at all. At that point the audiologist said we think she has Auditory Neuropathy. We had never heard of this, it didn't make sense that she can hear us but her brain does not respond to any sounds?? We were really confused and frustrated. That was in Jan. of this year. It has been a long year for us. Since then we have had another ABR done that gave the same results. I guess we hoped that the 1st ABR was a mistake. She has also had a MRI that showed everything was normal.
In the spring of last year we were able to get in touch with USDB (utah school for the deaf and blind) they have been amazing! They have helped us understand auditory Neuropathy a little more, they have done more hearing tests, they got Chloe fitted for loaner hearing aides to see if she may benefit from them. Chloe started going to preschool at usdb this fall and LOVES it!! She has a great teacher. Unfortunately Chloe has not benefitted from her hearing aides. Her teacher and us have noticed there is no difference with and without her hearing aides. She has made no progress with her speech and comprehension. So if we want her to be able to hear clearly and be able to progress the next step is Cochlear implants. We moved forward looking into Cochlear implants for her. We have been working with a great audiologist at primary childrens hospital. It has been a long road and I know we still have a long ways to go, but we have a surgery date scheduled for January 7th. I question myself everyday if this is the right thing for her. It is very scary and exciting all at the same time. For those of you who have no idea what Auditory Neuropathy is here is a definition I found. I am still trying to understand it but I think this is a pretty good explanation. Chloe's quality of hearing is what is affected they say that people with Auditory neuropathy hear alot of static/buzzing and they have good hearing days and bad hearing days.
Auditory neuropathy is a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. It can affect people of all ages, from infancy through adulthood. The number of people affected by auditory neuropathy is not known, but the condition affects a relatively small percentage of people who are deaf or hearing-impaired.
People with auditory neuropathy may have normal hearing, or hearing loss ranging from mild to severe; they always have poor speech-perception abilities, meaning they have trouble understanding speech clearly. Often, speech perception is worse than would be predicted by the degree of hearing loss. For example, a person with auditory neuropathy may be able to hear sounds, but would still have difficulty recognizing spoken words. Sounds may fade in and out for these individuals and seem out of sync.
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