“What’s Wrong With Your Kid?” and Other Stupid Questions About Microtia

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Disclaimer: This contains more f-bombs than “Fuck: The Documentary”. If that’s not your thing, please direct your attention to the 373, 000 other articles about microtia that do not use the word “fuck”. Actually make that 372, 998, because I am pretty sure that search result contains the last two potty-mouthed posts I wrote on the same subject. My bad.

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Parenting a child with a visible difference is interesting, because people can say some truly fucking stupid things to you. In honour of National Microtia Awareness Day I reached out to the microtia community in Australia, to help me put together this selection of frequently asked stupid questions about microtia.

If I can teach just ONE person not to be a dumb fuck, my work here is done.

** dusts hands**

1.. What’s wrong with your kid?

FUCK. OFF.

There is nothing “WRONG” with my kid.

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  1. What happened to his ear?

I know it can be awkward and phrasing this question involves a minefield of social etiquette, so I let it slide if people are genuine and kind. I am totally cool with people who want to know more about my son’s condition without being rude or intrusive, and I appreciate the opportunity it offers to educate people.

So here’s the short supermarket-queue spiel (at least, the one you have when your four year old is not cracking the shits because he wants a Kinder Surprise):

“My son has microtia and atresia, a congenital birth defect that forms during the first trimester of pregnancy. Microtia is the absence of the outer ear and atresia is the absence of the ear canal and inner ear structures. He has unilateral deafness and will need to wear a bone-conducting hearing aid for the rest of his life.”

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  1. What’s that thing on his head? 

“That thing” is his hearing aid, and he needs it to hear. It’s not a headband, it’s not some insufferable hipster statement and it’s not fucking bluetooth (yes people really say this, and sometimes I wonder what all this wireless technology is doing to our brains).

Kids with microtia wear bone-conducting hearing aids. They don’t have the outer ear structure or ear canal to support conventional behind-the-ear hearing aids, so they wear theirs on a soft band that positions the transmitter at the side of their skull.

The technology is fantastic and as they get older they can have the devices surgically implanted, but until their skulls mature and thicken they need to wear these less-than-discreet headbands to support the hearing aid.

Girls wear the headbands. Boys wear the headbands.

Of course, this leads to a lot of stupid questions. So many stupid questions.

Like…

  1. Hur hur hur… Is he a tennis player? Is he Bjorn Borg?

Hur hur hur…. Are you a stand-up comedian? Are you Jerry Seinfeld?

  1. Is that (hearing aid) a hands-free for your phone?

Sure is! Doesn’t everyone use their infant child’s malleable skull like it’s a handy new accessory for the latest iPhone?

  1. Will he be taking his hearing aid off for school/Santa/other photos?

No.

Would you ask someone to remove their prosthetic leg? Or get out of their wheelchair? Or take their glasses off? It’s a hearing device, not a fashion accessory. He needs it to hear you. But thanks for implying that it looks like shit.

  1. Can he go swimming?

Only at midnight during the winter solstice in the presence of a supermoon.

Of course he can go fucking swimming.

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  1. What drugs were you taking for his ear to look like that?

What drugs were you taking for your mouth to say something like that?

Here’s the thing about microtia. There isn’t much known about the reasons why this deformity occurs, though it has been linked to genetics and perhaps one drug – the acne medication Roaccutane.

Here’s the thing, Asker of Stupid Questions… We already feel shit about this and have re-examined in painful detail every single thing we ate, drank, breathed in, looked at or listened to while we were pregnant. Who the fuck knows? Maybe it was that one time I got stuck in a taxi with a middle-aged cab driver who insisted on listening to talkback radio the entire way home from the city.

(For the record, I have never personally taken Roaccutane, but even if I – or any other parent had – you can still go fuck yourself with this judgemental question. No one is to blame for their child’s microtia. NO. ONE).

Which leads me to my next stupid question…

  1. Whose fault is it that he looks like that? 

Well, if you are talking about those beautiful green eyes, I’m pleased to say they are my husband’s fault.

He does have my golden blonde hair though, and I sure hope he gets to keep it all because my husband went bald before his 30th birthday. Damn genes.

Oh wait… You mean the ear thing, don’t you?

Read my lips: IT IS NO ONE’S FAULT.

Let’s be real here… Your question is not really a question and is purely designed to lay blame and make the parents of that kid feel like utter shit. Kudos to you, asshole.

  1. Will they do anything to make him look normal?

Tell me what “normal” looks like, and then we’ll talk…

I’ll wait.

  1. Will he be able to walk straight? 

To be fair, if this is a stupid question then call me stupid, because I kind of wondered about this after having my son too.

The deformity associated with microtia effects the inner ear structures, and in addition to being vital for hearing they are important for balance. As far as I can tell, microtia doesn’t seem to impact on people’s sense of equilibrium.

So yes, they can walk straight – at least until they have their first underage binge-drinking session down at the local park.

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  1. When are you getting it fixed?

To be fair, this is a pretty good question, but “fixing” microtia is more complicated than you think. It’s not quite as simple as getting a boob job. Or having your labia puffed.

There are two entirely separate issues at play:

1) The missing ear canal needs surgery for hearing purposes

Australian surgeons do not routinely reconstruct the ear canal, so most Aussie kids will probably get by with hearing aids for their entire life. Surgeons in the US can perform that surgery, but it costs in excess of $100 000 (faaaaark) for Aussies who go overseas. That puts it out of reach for the majority of families.

2) The missing outer ear needs surgery for cosmetic purposes

Reconstructing the outer ear is entirely separate, and more easily “fixed” than the ear canal issue – but it won’t restore any hearing. There are several options to choose from, such as rib graft surgeries, synthetic prosthetics and (soon) 3D printed ears, which would be the least invasive (and freaking coolest) option.

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So in summary: whoever said “there’s no such thing as a stupid question” was totally full of shit – and clearly never had a kid with microtia. I’ve written about my son’s condition a couple of times before, and the links are below for anyone interested in further reading.

Six Words I Never Expected to Say: My Kid Has a Craniofacial Deformity

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

 

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53 thoughts on ““What’s Wrong With Your Kid?” and Other Stupid Questions About Microtia

  1. I enjoy these posts as I like to be educated and this is really interesting. Thx for sharing.

    As for the stupid fuckers and their questions….pfffft. My god. I mean, handsfree? Bluetooth? There are far too many stupid people in the world. I’m sure they outnumber us.

  2. Just when you think we’re becoming a bit more aware and supportive about difference, you realise the world is still full of boofheads. Sounds like you’ve had heaps of practice with the q & a’s, which sucks, but it does make you a fantastic advocate.

  3. I can’t believe people are really this stupid. It probably comes down to curiosity, but that’s never a reason to be rude or insensitive. Or to think that ‘different’ is still abnormal. Thanks for educating me on microtia too, and for the record, your son looks like a cutie x

    • Yes you’re right – people are rightly curious, and to be fair 95% of people are super polite and tactful about it, which is lovely. It’s that 5% of jerks that you tend to remember though!

  4. I feel like this post should be made into an official information brochure on microtia. You know, like in those walls of brochures you see at the doctors office? (Favourites include “STI’s and you”, “do I drink too much?” “How to help a loved one stop smoking” – I always want to grab a bunch and put them in my ex’s mailbox but then I realise I’m 35) My brother went profoundly deaf at age 18months after severe meningitis. When he was 5 he became the second person in New Zealand ever to receive a cochlear implant.
    Needless to say that was an interesting experience also. They were much bigger devices back then and far less conspicuous. People were unfamiliar with them too. I was so excited to read your article as soon as I saw the photo of your gorgeous son! I have an extremely soft spot for anyone who wears a hearing device attached to their head!!
    All the best for the future, I will look forward to reading the previous posts about this, and in the future! In the meantime, definitely think about writing the FAQ for the next publication of “microtia awareness” brochures!! 😉

  5. People are fuckers. Your son is one lucky little dude to have you in his corner, filling his sarcasm bag full of crackers that will serve him well as he gets older. And how good is technology?!?!? There are some incredible advances in medical technology going on right now, with so many more options available than a few years ago :).

  6. LOL: ” Well, if you are talking about those beautiful green eyes, I’m pleased to say they are my husband’s fault.”

    But seriously, people say that stuff? Their words are a serious backward step in human evolution. Great post! I didn’t know about microtia before today. Now I do.

    As for “there is no such thing as a stupid question” I actually say that a lot to my kids and the kids I work with. I may have to rephrase it because you’ve just proven me wrong.

  7. WHAT!??! People need to keep their big mouth shut! I can’t believe all those questions.

    It’s probably a silly question, but why is the headband white? Wouldn’t they be better off being a colour? It wouldn’t last as white for more than a second with my kids.

    Keep being awesome!

  8. With all the weird gadgets around today, I can almost see that side of the questioning. Almost. But seriously people, who are for the most point strangers, just need to shut the fuck up.

  9. I have to say that I’m honestly shocked in the way you have been asked those questions. I mean it’s one thing to be well meaning and curious but another to be rude and insensitive. Humans can really suck sometimes. But on a positive note, thanks for educating me on microtia.

  10. As a parent of a child with a visible difference too, I do get sick of explaining stuff to others even though I know it’s a great education opportunity and all that. Luckily for him, my son wears a hat and glasses most of the time so people don’t always see his white hair or realise that he has albinsim (or is albino as so many people insist on calling him). Mind you, he is starting to take ownership of this stuff himself. For Halloween, he dressed in a black skeleton costume and styled himself “The Black Albino!” Your son too will take ownership of his difference and own anyone who dares to say anything insensitive to him. By the way, I did use Roaccutane when I was younger for cystic acne. Most horrible and full-on drug I’ve ever taken, requiring monthly blood tests to make sure it wasn’t damaging my body too much (I was 14 FFS!). I’m not surprised it’s been linked to congenital birth conditions…shudders…

  11. You sure have had your fair share of stupid questions. It must be hard, I can’t imagine how frustrating it must be. I do hope some people were polite and not just rude when asking. But then again I’m sure by this stage you don’t care and are just OVER IT!

  12. Thanks for answering the questions…and being patient …but oh what the heck is it with (some) people. There must be some reason why some people can’t help themselves. Maybe it’s just being human. Still, let’s hope your lovely little bloke just continues to thrive with his wonderful parents and sibling!

  13. Wow, I can’t believe some people can be so insensitive! Actually, sadly, yes I can. I did find your post very informative though, thank you for sharing it with us. #TeamIBOT

  14. On behalf of all the stupid out there I am sorry. It is that insane need to speak instead of just leaving dead air.
    When my twins were babies the stupid and intrusive questions always came as a shock, whether it was the first time or 100th time I had been asked. My particular favourite was are they IVF (never once asked with my son!) one particular day I lost it and told this woman that they were SEX and she babbled something at me that she wasn’t asking that I said it was exactly what you were asking me whether we had sex and made twins or whether your taxes were used towards IVF treatments and I got twins. She was so insulted (she also asked why I wasn’t breastfeeding!) that I could be so rude to her. But gave not one iota of thought to how rude and intrusive she was being to me and my children. This was a person that I had never met before ever.
    If my honest and blunt replies to her embarrassed her I wasn’t sorry at all I can only hope it gave her a moment to think that not everyone thinks that deeply personal questions have anything to do with complete strangers.
    For the record I think your son is gorgeous and with you in his corner you will go far!!! xoxo

  15. The world is full of asshats!! Who honestly says such a thing?! Especially about a beautiful child, someone’s love. I remember being taught never to ask until you’re told – shame more don’t think this way. I love that Mr Hugz is to blame for the beautiful green eyes. #8 Good god!??! Although funny enough I was on Roaccutane in my teens. Strong bloody stuff, I don’t recall my skin being THAT bad but I’m happy with it today. It knocked me around a bit at the time. Your boys are just gorgeous Hugz and I never notice this you speak of until you mention it xx

  16. This is so brilliantly and humourously written. I feel I have really learned something. Excellently executed plus I fucking love swearing☺ xx

  17. I’ll never quite understand why some people see visible differences as some sort of excuse to act like an asshole. Happens way too often, and as my dear friend Carly often points out, it’s not your job to educate the world – sometimes we have to do that for ourselves.

  18. People! COME ON! “Is he a tennis player?” is my favorite because I can just picture the grin on the 65 year old blokey bloke who would have asked this, thinking how amazingly clever he was.

  19. I’ve had an inner ear issue since infancy which does impact my balance, that is a question I may be inclined to ask. The rest seem rather rude and even ridiculous. I certainly couldn’t define what is “normal”. I find that word rather irritating actually.

  20. Thanks for making me informed. Perhaps to shut people up you could tell them he is the chosen one and wears the special headband to communicate with a parallel universe…..I get curiosity but there is a fine line between rudeness. Your kid is very cute.

  21. I just love your answers. Are people serious? Because who the hell knows what bloody ‘normal’ is anyway? That blue tooth comment; no way!!

  22. There really is no limit on the stupidity of people, is there. I just can not imagine being the kind of person who would ask any of those questions, especially of a stranger. I tell ya, I’d be punching people out left, right and centre. You should get this printed as a little gate-fold flyer, distribute it to the other Mums and when people ask these dumb questions just hand it over and walk away. Or better yet, you could hold it up in front of them and then throw it down at their feet ‘drop the mic’ styles!

  23. Good god, do people actually say these fuckwitt things? How do you refrain from slapping them? I am so sorry to read that people can be such arseholes, especially when they are talking about a child. I reckon you must be a super strong woman though.

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