Friday, January 11, 2013

understanding hearing loss.

imagine your child is riding her bike.  she somehow manages to fall at just the right angle, and it becomes obvious immediately that she has broken her leg.  you take her to the doctor, have x-rays done, and wait to hear how bad it is, how long you will need a cast, and if any surgery will be needed.  the doctor walks in and says, 'it's broken.  i'm just going to go ahead an amputate it.'  you're thinking, wait, is that necessary?  would a cast not work?  pins or screws?  having it set?  is this really our only option?
it's pretty unusual for a child who breaks their leg to need it amputated, although not completely out of the realm of possiblity.  and if a doctor suggested this as the first option you would likely want a second opinion.  i'm going to compare this to my youngest daughter being deaf.  whenever someone inquires about her hearing aid, or finds out she's deaf, i immediately get a 'oh, are you going to do cochlear implants?'  of 'you should get those implant things so she can hear.  have you ever seen those youtube videos where a child hears for the first time?  it's just amazing!'
i don't expect the general population to have information on hearing loss and how it's treated.  i only knew basics before shilo came along.  so i'm going to try to explain why cochlear implants do not work for everyone, and why shilo has a baha.
first of all there are tons of little components that make up your inner ear, and aid in hearing.  you have an ear drum, some tiny bones, air and space, and a cochlea.  the first few things take the noise in and send it to the cochlea, which is hooked to a nerve.  that nerve sends the signal to your brain to tell you what you are hearing.  if any of these things isn't developed correctly, or does not work, your hearing is affected.  even an ear infection causing fluid to build up behind the ear drum can cause temporary hearing loss.
there are three different types of hearing loss:
conductive hearing loss:  Conductive hearing loss occurs when sound is not conducted efficiently through the outer earcanal to the eardrum and the tiny bones (ossicles) of the middle ear. Conductive hearing loss usually involves a reduction in sound level or the ability to hear faint sounds. This type of hearing loss can often be corrected medically or surgically. 
sensioneural hearing loss:  Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear (cochlea), or to the nerve pathways from the inner ear to the brain. Most of the time, SNHL cannot be medically or surgically corrected. This is the most common type of permanent hearing loss.
mixed hearing loss: Sometimes a conductive hearing loss occurs in combination with a sensorineural hearing loss(SNHL). In other words, there may be damage in the outer or middle ear and in the inner ear(cochlea) or auditory nerve. When this occurs, the hearing loss is referred to as a mixed hearing loss.
all these definitions were taken from this website.
and now the basics of a cochlear implant.  a c.i. actually takes the place of your cochlea.  in essence the doctor goes in and kills the cochlea to implant an artificial one.  so like a prosthetic limb that an amputee might wear.
so someone with a conductive hearing loss doesn't need a cochlear implant.  there's no reason to kill their cochlea since it is working just fine.  someone with sensioneural hearing loss could benefit from a cochlear implant.  and someone with mixed may or may not benefit from an implant.
shilo has mixed hearing loss.  both of her cochleas work perfectly fine.  she has either tissue or fluid in the inner ear where there should be space.  and her snhl is past the cochlea and on her auditory nerves.  so killing her cochlea would be like amputating a leg that would work just fine with a few pins to help the bones do what they should.
shilo uses (and i say that term loosely, because she's not a very big fan of wearing her hearing aid at the time) what is called a bone anchored hearing aid, on a soft band.  (they don't actually implant the anchors until children are at least five.  fda regulations).  so what her hearing aid does is bypass the outer ear, and send the  sound through her skull bone directly to her cochlea.  even a hearing person and put this on their head and 'hear' through it.  it's a pretty spectacular piece of equipment.  we have a friend, baby aria, who uses a baha as well.  her hearing level is normal with it.  shilo's hearing levels will never be normal because of the damage to the auditory nerves.  so even with the baha on she is still only hearing at a moderate level.
so the next time you talk to someone, and find out their child is deaf or hearing impaired, please don't encourage them to have an immediate amputation.  parents are being bombarded by so many different types of hearing aids, as well as trying to decide whether they want to use sign or an oral method (or both).  they have lots of different professionals telling them different things already.  i personally, am not even a fan of the 'i'm so sorry.'  we aren't that sad about her being deaf.  she's an awesome little girl.  she can feel music.  she LOVES signing.  LOVES it.  she has multiple words she signs regularly (mama was her first).  she understands so much more than she can sign back to us.  a hearing person feels like being deaf means you are missing out.  since she's never been able to hear, she isn't missing anything.  her world is what it always has been.  and we accept her just exactly the way she is.

why would we want to change her?


  1. Funny you use the broken leg amputation example because that was the very first thing I heard from the two leading doctors in my area on Joey's condition. Yeah, I feel like we are only delaying the inevitable but we do what we do because they are OUR children and we are the ones responsible for trying to make the best choices possible for them.

    I do, however, appreciate all suggestions and comments (especially if they are made in a 'trying to be helpful' way) because you never know what will happen further down the road.

  2. I appreciate you writing this. I feel like this is one of the unintended consequences of marginalized groups sharing a part of themselves with the dominant group. It seems like inevitably, the dominant group turns the thing into whatever they want it to be.

    I'm not explaining it very well, but hopefully you know what I am saying. Just keep writing this stuff (if you want to,) because we need to hear it.

    1. nope. made perfect sense to me. and definately what we experience in relation to so many things with our girls!