Friday, July 13, 2012

my daughter is deaf.

i mentioned before that shilo is deaf.  we have been working through the details of all of this for a ridiculous amount of time, while my daughter was left without the ability to get hearing aids quite a few months now.  so i thought i would share from the beginning of when we 'knew' and where we are going with it currently.
shilo failed her newborn abr.  this isn't completely uncommon for children with down syndrome.  so we made a mental note to get that followed up, along with lots of other things.  we were in the process of getting a referral for it (because you can't just call and say, my daughter failed this and needs retested, a doctor has to tell another doctor that) when she was admitted to riley in december, for what turned out to be congenital hypothyroidism (also common with down syndrome).
by this point, jason and i were VERY suspicious that shilo really couldn't hear.  she didn't startle.  she didn't react to her very loud sister. ever.  she didn't make any noises outside of crying.  she showed all the signs of a child who can not hear.  so we got home, went through the holidays, and were working on the referral (wrong paper sent, new one for the referral, new rules, different information needed, RIDICULOUS) when shilo was readmitted in february.
an abr is most accurate on an infant when she is sedated or under anesthesia.  shilo was intubated, and sedated for nine weeks.  and so i was all, 'hey, while we are here, just waiting on her to get well enough to have surgery, maybe we could go ahead and do another abr.'  and after asking a few different doctors i finally got one who said yes.  audiologist came and results were not surprising.  right ear had severe and profound hearing loss.  left ear had moderate to severe hearing loss.
i'll do my best to be mostly factual here, and not so ranty, but i'm likely going to rant a little.  children with down syndrome also are more likely to have fluid on their ears.  so before the audiologist were willing to give me a referral to get my daughter her much needed hearing aids, they wanted to do ANOTHER abr.  i kindly explained that this was ridiculous.  so they did another test to see if the ear drum reacts.  shilo's didn't, which they explained meant she likely had fluid on her ears.  they also explained that children with fluid on their ears don't usually have the degree of hearing loss her abr was showing.
as a mother who tries to educate herself, i also knew that the majority of children who had hearing loss due to fluid still reacted to noises.  the fluid might make things sound muffled or quieter, but someone screaming would still cause them to turn their head and look.  shilo, no response.  so i tried to have this conversation with a second audiologist and an audiology extern at the hospital.  the extern finally said to me, 'well, children who have fluid on their ears could lose hearing.  if we do tubes, then we can get an accurate view of what her hearing really is.  i think we could *both* agree that you would like your daughter's ears to be healthy.  right?'  so in my equally sing songy and condescending voice i explained that my (then) seven month old had cognitive and developmental delays, and the longer she goes without being able to hear, the more of a problem that is.
thing is, in this process, i can't just take her to get hearing aids.  she has to have a referral.  so tuesday, shilo got a g-tube, ear tubes, and had a sedated abr. again.  turns out, shilo didn't have fluid in her ears.  the reason her ear drums didn't react to the test is because something in her ears doesn't work.  she can't hear.  so much so that regular hearing aids wouldn't help her.  she will have to get hearing aids called bone conduction aids that sit behind her ears on her cochlea bone to help transmit sound waves directly to it.  and even with that her hearing will likely only be at a moderate level.
her official assessment is profound hearing loss (she is completely deaf) in her right ear, and severe in the left.  the extern who talked down to me was the one who got to come tell me after surgery all about my daughter's (lack of) hearing.  i'm trying not to stay angry at her, but i do hope that since she isn't an official audiologist yet, that she walks away from this specific case learning that sometimes, parents do know what they are talking about.
it's also been hard for some of the audiologist we have worked with to wrap their heads around all of this.  multiple ones have said, this just isn't something we ever see in down syndrome.  i think, sometimes, when your kid has a label, that doctors forget that they also are people.  yes, shilo has an extra chromosome.  she ALSO has 46 normal chromosomes.  and just because her body has lots of the features that come along with down syndrome, does not mean that everything about her is down syndrome.  shilo is not down syndrome.  she HAS down syndrome.  it does not define her.
and as far as shilo's hearing, we are doing our best to expedite the process of getting her hearing aids. we have been signing with her since she was very little, and have some awesome people through early intervention who will be coming to help us become fluent in asl.  there are aspects of it all that make us sad. but right now we are trying to focus on getting shilo what she needs.

just a little end note: i know ALL of the options for hearing aids, and cochlear implants.  please don't ask me if we are going to do implants, or tell me why we should.  don't send my you tube links to the first time some little boy heard.  we will figure out what is best for shilo, and go from there. :)  however, if you have a child with bone conduction hearing aids, i would LOVE to hear from you, ask questions, get advice, etc.


  1. Wow. Sounds awful. I hope the process speeds up for you guys & you're little girl is able to hear better quickly.

  2. It is sad when a medical professional is not really looking at your child or listening to you, as the parent. Do you follow With a Little Moxie, Moxie's mom, Meriah? She is deaf. She might be able to help you with some of your questions.

  3. Being a ped OT for many years as well as a mother of four children (one with a disability), I've always advocated that parents know their child best and should be listened to. You and your husband know Shilo best and are her only voice. Keep speaking up to us so called professionals. Also, I would recommend that you might want to consider a letter to the audiology department with your experience, comments, and constructive advice. I do realize it is scary as a parent to do this for fear of retaliation or getting a bad reputation but how else do young professionals (or old ones for that matter) learn from their mistakes?
    Blessings - Amy

  4. You might try touching base with the BSU speech and hearing clinic. There are several kiddos running around there with CIs. They might be able to give you some additional insight and hook you up with osme moms of kiddos with them to hear their take on them. Ike has been going there since he aged out of first steps, but my biggest regret is that we didn't start sooner with them. The quality of service is soo much better than what we were getting from first steps or even when we private paid at a local company. Good luck!

    Kara Holloway

    1. we are working with the indiana school for the deaf and love our first steps providers. we aren't getting coclear implants. shilo will have bone conduction hearing aids, which are very different. we are doing everything in our power to do what we know is best for shilo. :)

  5. You are a great advocate for both of your daughters.