So, it’s Hearing Awareness Week.
Another bloody awareness week. Last week was Earworms Have Feelings Too Awareness Week, next week is Ice Bucket Challenge Injuries Awareness Week and the week after that is Awareness of Another ‘Awareness Week’ Awareness Week.
So you know that I am all about serious awareness campaigns and public education here on Hugzilla, and today’s post is no different.
Today we are going to talk about microtia.
What the hell you just say, Zilla?
And aural atresia.
Yawn. No idea what you are talking about.
I had no idea what microtia was either, until a slippery newborn boy was unceremoniously hand-balled onto my bare chest back in May 2012, minus an ear.
Actually, that was a lie.
I had no idea WTF microtia was then, either. All I knew was that this kid I had just birthed – my baby – had no ear, and in its place was lump of misshapen cartilage that looked like a flesh-coloured peanut.
I noticed it as soon as he was placed on my chest and the strange thing is that I was incredibly blasé about it, possibly because only minutes earlier I had been bellowing like a wounded water buffalo and screaming “I WANT TO DIE! OOOOHHH GOD I WANT TO DIIIIIEEEEEEEEEEE!!!!” over and over again during a particularly painful induction. So after it was all over I was all like “Oh, he’s got no ear. That’s weird”, and then the euphoric post-labour endorphins kicked in, and then someone brought me the BEST CUP OF TEA EVER MADE and then I realised that I was going to have to try and breastfeed this bloody baby and all of that got pushed to one side anyway.
I had a newborn to deal with. I had shit to do. Sure, the kid was missing an ear but I had some deep, maternal instinct that he was OK and that it was nothing serious, so as far as I was concerned it was business as usual. No one was able to tell me what it was and I never thought to ask anyway, so it didn’t matter.
The next day a nurse at the hospital would come into my room and ask me if I wanted to talk to a social worker and I’m pretty sure I looked at her as though she had two heads instead of one and asked “Why?” in genuine bewilderment. She mentioned softly that people who gave birth to babies that were “a bit different” often needed to speak to someone about it but the only thing I needed to do was fill a syringe with colostrum, so I thanked her and sent her on her way.
She was the first in a long-line of health professionals who kept expecting me to dissolve into anguished tears at every appointment, only to be met with disappointment when I didn’t. They probably all thought I was a sociopath. The only tears I’ve ever shed for my son’s condition were when he was 18 months old and I was getting the run-around on the phone regarding his first speech therapy appointment, and even then I think it was just because I was pre-menstrual and trying to make sense of nonsensical government bureaucracy.
I could sense that my husband was a bit concerned though, in the way that he has of pretending he isn’t worried about something when it’s really obvious that he is.
It’s the first thing that Dads do, right?
Mums get stuck straight into cuddles and making goo-goo eyes at the gooey kid while Dads surreptitiously count the appendages. Ten fingers, ten toes, two arms, two legs, two eyes, two ears….
One ear. And one…. who the hell knows?
I know it sounds crazy but it didn’t worry me and I didn’t give it any further thought. Unbeknownst to me, my husband went home later that evening and spiralled into a google frenzy while I spent the whole night pacing up and down the ward with a screaming newborn, watching him sleep in fits and starts in between choking on his own mucus. (He would later be diagnosed with silent reflux, and what a barrel of fracking laughs that was. I shed some tears over that, let me tell you)
I didn’t know what the story was with his ear but I just assumed it was cosmetic and got on with things. I was wrong about that.
My son has microtia and aural atresia, which is a congenital birth defect that forms in utero during the first trimester, and is often linked to other genetic syndromes. Microtia is the absence of the external ear structure and aural atresia is the absence of the ear canal and the inner ear structures.
My son has no outer ear. No ear canal. No ear drum. No ossicles (the tiny bones in the middle ear that conduct sound). But, he does have a cochlear so there is a little bit of residual hearing on the microtia-affected side.
All of this means that he has unilateral (single-sided) deafness and will need to wear a bone conducting hearing aid for the rest of his life. He can’t wear the more traditional (and more discreet) behind-the-ear hearing aids because:
a) he doesn’t have an ear for it to clip onto
b) he doesn’t have an ear canal for the ear piece to fit into.
Kids with microtia have to wear a bone conducting hearing aid on a wide cloth headband instead.
This means that:
a) people make lots of jokes about my son looking like a tennis player
b) people mistake him for a girl all the time
c) people think I am some kind of insufferable hipster who insists on putting a headband on my male child (because getting a toddler to keep anything on their head is oh-so-flipping-easy, so let’s make a fashion statement)
Other fun facts about microtia:
> Microtia is the result of a rare 1 in 10 000 genetic abnormality, but has also been linked to the acne drug Roaccutane. Some people feel guilty or blame themselves for things they may – or may not – have done during their pregnancies but I can honestly say that I never have. Shit happens.
> People with microtia cannot localise sound – which is a serious hazard – particularly when it comes to road safety. Watching my son turn his head completely the wrong way when he hears oncoming traffic is terrifying, quite frankly.
> People with microtia struggle to hear in noisy environments because they can’t isolate specific sounds from background noise, making things like school, shopping centres, parties and group conversations difficult to communicate in. At home, that means keeping the TV off as much as possible and not playing music, which *selfish parent alert* I miss terribly.
> People with microtia often suffer socially and academically, and are more prone to bullying, isolation and depression. I know I’m going to have to teach my son how to deal with the ingrates and assholes who are going to mock the deaf kid with the facial deformity and it’s not something I’m particularly looking forward to.
> People with microtia often experience speech and language delays. My son was in speech therapy at 18 months, and is still behind his same-age peers.
> There are lots of little things too. My son can’t wear glasses or sunglasses, and he can’t wear a hat or a bike helmet at the same time as he is wearing his hearing aid.
But, on the plus side…
New 3D printing technologies and implantable hearing devices are being developed all the time, so we will have a lot of fantastic options for reconstruction and hearing assistance as he gets older. The technology is still in its infancy but scientists have already been able to print a 3D ear from someone’s own genetic material.
My son is not in any chronic pain and forevermore has an excellent excuse to ignore his mother. Microtia and male selective-hearing make for a potent combination.
So, there you have it. I just awareness-weeked your asses.
Microtia and aural atresia. You know what that shit is now.