My Daughter's Hearing Loss

Once upon a time I took my daughter on her 5th birthday for her routine check up/ kindergarten physical.  During this appointment she failed the hearing test part of the physical.  This was the first time she had taken a hearing test where she had to raise her hand. They thought because of her age that maybe she just didn't follow directions however she did read and pass the alphabet version of the eye test.  So they could not sign off on the hearing part of her physical.

Next we were referred to an audiologist to double check her hearing. It was the same as the first test at the pediatrician's office. They then did another test where she didn't need to raise her hand and it too was the same as the first two tests.  We were then told our daughter has Bilateral High Frequency Sensioneural Hearing Loss.

Bilateral High Frequency Sensioneural Hearing Loss according to the American Hearing Reasearch Foundation and Wikipedia its a type of hearing loss in which the root cause lies in the vestibulocochlear nerve (cranial nerve VIII), the inner ear, or central processing centers of the brain. Sensorineural hearing loss can be mild, moderate, or severe, including total deafness. Most sensory hearing loss is due to poor hair cell function. The hair cells may be abnormal at birth, or damaged during the lifetime of an individual. There are both external causes of damage, like noise trauma and infection, and intrinsic abnormalities, like deafness genes. Sensorineural hearing loss is the most common type of hearing loss, occurring in 23% of population older than 65 years of age. The term “sensorineural” is used to indicate that there is either a cochlear or an eighth nerve lesion. The diagnosis of a sensorineural pattern hearing loss is made through audiometry, which shows a significant hearing loss without the “air-bone gap” that is characteristic of conductive hearing disturbances.

All of a sudden we were thrust into a world we were not prepared for. So many different emotions ran through me that day.  I definitely went through the grief process. We thought we were finally in the clear of specialists etc. (That's a story for another day) and moving forward. So many questions I had about the process and if I caused this to her in some way.

A whirlwind of activity began. CAT scans of her head to make sure this wasn't a structural issue with the bones of her ears itself. That was negative. It's straight damaged cilia in her ear that to this day we have no idea what it is caused from. Getting medical assistance started in order to pay for her hearing aids, appointments etc. was a struggle. Contacting her elementary school to let them know she would need hearing aids and an IEP with the hearing support teacher to help her adjust (she does not qualify for academic help she's on track with that thankfully). Here is my precious baby going to a new school where she knew no one else and now she has these new hearing aids.

                                             

Needless to say when we first told her about them she was very upset. She fought us on it. We even had a book from her audiologist from Mickey Mouse Clubhouse that explains it all to her. Once she accepted all of this to a point, we talked with her and her teacher about how she wanted to approach the class. She decided to read the Mickey Mouse book to her class and show them. We are very lucky that her peers accepted her as nothing had changed. I think that was good for her.

Edited on 7/18/14 to add the following picture of the book made by Disney for Siemens:

The only indication we had looking back that she may have had hearing loss was the fact that she did not like high pitched or loud noises. She would cover her hears if she heard a motorcycle or trash truck, certain peoples voices she would do the same, automatic toilets were the devil and caused meltdowns of epic proportions.  So we just avoided things that were loud like the movies or bowling. We just adjusted our life to make her more comfortable with out realizing she had an issue. She past all her previous hearing tests, passed speech screenings and academic ones. 

She can hear a large portion of language and what she can't hear it's now bridged with the hearing aids as her hearing goes back up at a certain frequency but not ever really hearing it before it caused her pain. They may not allow her to decipher some sounds still but she has a better shot. The sounds in the frequency she is missing are like an older person who knows you're saying something but cannot quite catch it.  There is no cure and we have no idea of the future. This could get worse. We have no idea.

Here is a picture of her type of hearing loss. This isn't her exact audiogram or line but basically anything below the line she can hear and anything above she cannot hear and/or decipher.

The unknown drives me crazy. We don't know if her earlier illness in life caused this, maybe something in utero, we can't think of any young family members having this. I still feel guilty thinking it's something from me that has caused her this life long issue. I tried to do everything right during the pregnancy, I tried my very best when it got rough to stay calm, and maybe it's just in me genetically.

I'm very thankful she is a strong willed and resilient child. I'm thankful her peers treat her the same but think she has supersonic super hero hearing now.