Uncharted Territory

About a month ago Katelyn was diagnosed with moderate to severe hearing loss.  She hears higher tones better than lower tones. We know very little at this point beyond that. It does explain her delayed speech and behavioral issues in large group settings.

The hearing loss could be genetic, but with no family history, genetics are probably not the case. It most likely occurred in one of two ways, either nerve damage in her inner ear or damaged/malfunctioning cilia in her inner ear.

They have verified that there is no fluid and all parts of her outer ear function normally. She did pass her newborn hearing screening while we were in the hospital, and does respond to sounds around the house. Many people are also inquiring about ear infections, but she has never had an ear infection.

On March 8th, Katelyn will undergo testing known as an "Auditory Brainstem Response" evaluation. This testing will tell us precisely how severe the hearing loss is and at what levels and pitch. It is not a hearing loss across the board.

After diagnosing the nerve damage vs cilia damage, we can plan a management route. If it is cilia damage, Katelyn will be fitted for hearing aids and we will learn some sign language in order to communicate when the aides cannot be used (ie: the pool, bath, etc). If the damage is to the nerves, then our options are learning sign language as a main form of communication and possibly a cochlear implant.

At this point, there is not a medical cure for Katelyn's hearing loss. We can only manage it. There is not a chance of regaining her hearing. That is why I refer to it as management, rather than cure. Please keep us in your thoughts and prayers. I will keep the blog updated as I find out more information.


For more info on hearing loss: http://www.cdc.gov/ncbddd/hearingloss/index.html

For more info on the ABR test: http://www.chp.edu/CHP/Auditory+Brainstem+Response