My Two Year Old Only Has One Ear. This is Why

So, it’s Hearing Awareness Week.

Yawn, right?

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?

Microtia.

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.

Screen Shot 2015-08-30 at 12.26.01 pm

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….

Fuck.

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.

portrait

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

and

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

OR

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)

Screen Shot 2014-08-29 at 10.13.15 pm

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.

Linking up with Essentially Jess for IBOT and Help, I’m Stuck for Things I Know.

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59 thoughts on “My Two Year Old Only Has One Ear. This is Why

  1. I was so not aware of this condition. So job done- you have raised awareness! Seriously though, I love that the only one ear meant bugger all to you, they’re all perfect in mum’s eyes 🙂 Hopefully new technologies will improve things for your son but in the mean time it would appear that he has excellent support at home 🙂

    • Thanks, not many people are. I somehow managed to get through 35 years without having ever seen anyone with it or even heard about it too. The universe always manages to surprise us. LOL

  2. I love how you have made even an awareness week full of humor and fun – I learned a lot and thank you for that. Xxx deb

  3. Well there you go! Consider me aware. I think the headband is very cute and totes hipster but I get the worry about meanie school kids. Sometimes kids with facial difference and so forth end up being so cool and resilient that they brush all that shit off so here’s hoping xx

    • Oh man, I truly hope so. The kid already has oodles of swagger and he is only two years old, so fingers crossed. Plus, I’m gonna teach him everything I know about the fine art of sarcasm and disabling your opponents with quick wit. It can’t possibly fail. LOL.

  4. I think the Nirvana shirt cancels out any hipster vibes from the headband 😉 But seriously I think that the way you are handling the emotional side of his condition is amazing. And with you to teach him excellent smack-downs this kid will have everything he needs to deal with the jerks and douche-bags that he may encounter xx

    • Hahahahahha! The poor kid, being the unwitting subject to my 90’s nostalgia! But yes, here’s hoping I can teach him many anti-douchewad skills. Surely all my time being a douchewad has taught me something about that…LOL.

  5. I’m so glad you did this post. You have alluded to all this previously but never gone into detail and I must admit I was a wee bit curious about the “story”. I love that as his mum you barely even noticed when he was born. I have a question and hope it isn’t stupid…can he hear out of his other ear? Or does this effect both sides? I’m sure there is something you have explained here that makes this obvious but consider me a ditz today. By the way, I have no doubt with you as his mum he will only succeed. x

    • Yep, the other ear is perfectly normal and at this stage has optimal hearing. We have to get it checked regularly otherwise he could be almost deaf and we wouldn’t know about know it. It’s really common for young kids to recurrent ear infections or fluid in the ear requiring grommets, and that could really impact on his quality of life and ability to develop speech if we aren’t on to it immediately.

  6. Just from what I have read of your blog, I think if he takes after you he is going to be fine. Probably not highest on your list of priorities, but you could probably find somebody to make some cool covers for the headbands…maybe on Etsy or something? Oh and thanks for the info – learn something new every day!

    • LOL that’s the first time anyone has ever said that to me! Good call on Etsy. I’ll have to see what we can do because has just grown out of the white headband and the other ones we had supplied are pink and orange. Very subtle.

  7. You totally just hearing awareness week-ed my ass! That is a very interesting, says the journo in me! I know a bit about ears as I have a dodgy right one and have had various surgeries for an inner ear disease that was growing along my facial nerve to my brain. BUT they scraped it off, including some of the bones inside the inner ear but I’m not completely deaf in it, but one day I might be. Thanks for raising anEARness of this – yes I’m a dick! x

  8. My husband and 2.5yr old daughter both have a genetic syndrome which means they are missing half their fingers (i.e. they look as if they have been chopped off halfway down- you should see the looks/comments I get about that- “what did she DO?!” you terrible parent!) but it hasn’t stopped them doing anything. In fact I think these types of things work as great dickhead detectors. Whenever someone has refused to shake my husband’s hand, or put change on the counter instead of in his outstretched hand, we know straight away that’s a person/company we don’t want to do business with. And when people are drinking you can get away with some crazy stories about ‘what happened’ often scoring a free round of drinks (favourites so far: shark attack [great for tourists or when you’re overseas], blender accident as a child, band saw etc). I hear you about the hospital staff- if I had a dollar for every time I was offered genetic counselling! My uncle is a professor of genetics, we know more about this rare condition than most doctors! We’re not worried about it! Your little dude is rocking his headband and I think he’s going to be just fine 🙂

    • That’s a brilliant way of looking at it. I think my kid will also have a well-honed dickhead detector one day. And some awesome pub stories. Shark attack. LOL. That’s so cheeky 😉

  9. Hey Hugz,
    An interesting and informative post – and entertaining as always! Your little man is gorgeous and you’re obviously an amazing mum ❤
    Yell out if he needs back up later on. While my three year old won't be able to beat any assholes to a pulp for him, he can provide a useful bully decoy with his extreme nerdiness (which I adore) and we shall devise some sort of 'home alone-esque' booby trap… I'm tired. I think I'm tired. 🙂

  10. I’d never heard of either of these conditions before. I imagine the tennis player jokes would get old very quickly. Its cool that they have a hearing aid option for them still even though they have no outer ear. My friends son was born without a little finger and they’ve been able to use the 3d printer technology to do up a prosthetic finger for him so anything’s possible.

    • Yeah they do, unfortunately but I keep reminding myself that people say it to lighten the mood and alleviate their awkwardness, so I try to see it from their perspective. 3D Printing is seriously exciting. It possiblys mean we might be able to avoid invasive operations to retrieve rib cartilage instead.

  11. I’d never heard of it either. My 6 y.o. niece is profoundly deaf and has a cochlear implant, something (a magnet?) has been inserted in her skull near the ear so that the thingy that she hears with (sorry I’m not up on the lingo) is held on by magnetism – could that be done for your boy so he doesn’t need the headband?

    Thank you for sharing – and your story is a beautiful example of mother love – who cares if anything is wrong, this is YOUR BABY AND YOU LOVE HIM!

    • Thanks Janet – yes my son can also have one of the implantable devices that uses a magnet to hold it on his head. I think in Australia we have to wait until he is at least 6 or 6 and the skull is a certain thickness. Will be very cool!

  12. You are without exaggeration one of the funniest and most talented writers I’ve come across. I bow to you Hugzy. I have a friend who had a baby girl twenty years ago with the same condition. Never stopped her becoming a model/lawyer. But seriously, you should be getting paid a lot of money for this stuff.

  13. I haven’t heard of microtia either – but I love that you’ve taken it in your stride and your son is being raised in a positive environment. Thanks so much for sharing this. xxxx

  14. I had a teacher at school that has this, at least he’s missing an ear and what’s left looks like your sons ear. He never told us exactly what it was, and instead would make jokes about getting in a fight with mike Tyson.

  15. I love your attitude to this – I wouldn’t have been so together about it until I was fully informed! I like Tegan’s idea about Mike Tyson too 🙂 Beats the tennis player reason 🙂

    Hello from #teamIBOT

  16. First up – how cute is your little boy. Just gorgeous! I had never heard of this before. Thanks for being so open and funny with this post. Consider our asses aware – or something like that :/

  17. Thanks for teaching us and making us aware. I haven’t heard of this before and appreciate you frankness (with humour). What a gorgeous boy he is. You know those government speech things – they made me cry more than once actually. So I get why they would get you down!

  18. Good on you for handling what could be a devastating thing in such an awesome way.
    Thank you for sharing.
    Maybe if more causes were told in a way like you have more people would pay attention.
    Your little man is just too cute!!

    • Yes, I can see why they would think to so that but it honestly took me aback. We were doing OK 🙂 I would have very much appreciated the offer if we’d been struggling though, so I’m glad they thought to ask.

  19. Hello I was born with just one ear just like your son, I am 31 yrs old and just to give you some peace of mind I had never been bully about it there are days that I complitely forget that I have that issue. I had several surgeries only when I was a kid but did not went on with them so my ear was not completely restructured. I live a normal life I work have friends and been with my partner for 12 yrs so I can happily say im bless. Thank you

  20. I’ve seen/heard about this before but well done for explaining it so clearly, I certainly understand it better now.

    I relate to not worrying while the husband goes into overdrive. Our son was born with quite a noticeable birthmark on the side of his face which most likely won’t disappear. I couldn’t have cared less, still don’t really. Husband immediately started worrying about him getting bullied at school. We’ve still got 2 more years till we have to face that.

    • It is so incredible that you say that because my husband was EXACTLY the same. The first thing he worried about was the bullying side of things, and at that point it hadn’t even entered my head. It just seemed so far away. Now my son is three and will be starting school in a couple of years, so it is starting to feel very real.

      • It’s funny isn’t it how the make and female reactions are so different, I suppose they complement each other. I do worry about it a bit now he’s older. My vague plan is to make sure he knows he’s totally awesome and anyone who makes mean comments isn’t awesome at all and is therefore not worth worrying about.

      • Absolutely! And my plan is similar to yours as well. It’s probably a hard one for them to understand but I will make sure he knows that when anyone is mean to him it says more about them and their unhappiness than it does him.

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