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

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Disclaimer: There’s a bear in there. And a swear as well. There are people with games. And stories to tell. Open wide, come insi – …. OK, that’s all mostly bullshit. There are no bears or games, but there ARE most definitely swears. And a rambling story of sorts. If you’re not a fan of f-bombs then you might want to click out now.

*****

So, September is Craniofacial Awareness Month.

WAIT.

STOP.

Come back!

I’m not going to ask for money, I’m not going to bore you with an overly earnest Public Service Announcement and I’m not going to ask you to wear or do something stupid on the premise that it raises awareness of people wearing or doing stupid things.

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Compassion fatigue. It’s a thing. I get it. And I know that I’m not really selling it with sexy medical terminology like “microtia and aural atresia”and “hemifacial microsomia”, but y’all gonna take pity on me and grab a cuppa anyway, yes?

(Jesus, I can sit and read any old shit if I’ve got a good cup of tea on the go – even my own blog. You can do this!)

Anyway, before I had kids I had NFI that September was Craniofacial Awareness Month, and honestly could have given less than zero fucks either way. That’s nothing personal against anyone effected by this but it just wasn’t on my radar, the same way that World Turtle Day, Self-Represented Litigant Awareness Day and Condom Week weren’t on my radar back then either.

And then I gave birth to a child with a craniofacial deformity.

Radar. PINGED.

You know those children of mine that I never write about? (ha ha mummy blogger fail) Well, one of them was born with a congenital birth defect called microtia that has left him with a facial deformity and unilateral deafness. (I’ve also written about that here once before if anyone is interested).

He has no ear on the right hand side of his face, no ear canal and no inner ear bits (technical term), which also means he is deaf on one side and has to wear a special bone-conducting hearing aid. In place of the external ear he has a peanut-shaped piece of misshappen cartilage, and he also has a jaw deformity which makes his adorable little face lop-sided.

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It’s quite surreal when you give birth to a child with a visible difference. There’s no greeting card for that, and people don’t really know what to say. (Here’s a tip: “Congratulations!” is a good place to start). No one at the hospital will hand you a brochure titled “Hey! So Your Kid Looks Kind of Different – What’ s Up With That?”, and there’s no chapter about it in all those pregnancy books either (if there was you probably skipped it anyway because THAT WASN’T GOING TO HAPPEN TO YOU).

It leaves you in a weird limbo-state.

No one at the hospital could even tell us why our son looked different, and what that meant for him. I had no idea if he was in pain. If he had any other associated medical issues. If it was just cosmetic (no) or whether it was something more involved (yes). The hospital staff didn’t even have a word for it at the time, and later I would realise that this was because microtia is incredibly rare. They had simply never seen it before.

So, tits-deep in the fug of antenatal exhaustion we fumbled blindly through this unexpected new development. My husband went home and threw himself down the google rabbit-hole using “deformed ear” as his only reference point, while I barely gave it a second thought as I paced up and down the corridor all night with a screaming baby who refused to be silenced #newbornpriorities #fuckyousilentreflux

Hubby was at home playing “Dr Google” while I was stuck at the hospital playing “Most Hated Person on the Ward” because those poor exhausted bastards and their new babies were all trying to sleep, and there I was – failing Motherhood 101 because nothing I did comforted my wailing child, even though he was my second and I should have known what the fuck to do. His appearance became a total non-issue as I strugged with more pressing aspects of the newborn stage.

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Twenty four hours later I was sent home with a referral letter to the children’s hospital for a battery of tests and – finally – a name for my son’s condition. The letter came from the hospital and the name came courtesy of my super-googling husband, in lieu of an actual medical-type person who could impart that information to us. This is not a criticism of the hospital – they did the best they could with the resources they had.

At one point a midwife did ask if I wanted to see a counsellor to talk about my feelings or whatever, but I was busy squeezing colostrum out of my tit and into a syringe at the time, so I took a hard pass on that and kindly sent her on her way. I didn’t really know how I felt about it all at that point anyway, because I’d just had a frigging bloody baby. How did I feel? Tired? Fucking tired? Really fucking tired? Or some variation thereof.

The upshot for my son is that he is staring down the barrel of a number of different surgeries as he gets older: surgeries to reconstruct the outer ear, surgeries to implant sophisticated hearing devices and surgeries to correct his jaw deformity. We’re hoping that 3D-printed ears become a thing sooner rather than later, because it means he can avoid invasive rib graft operations.

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He also needs to make his way through school and life as someone with a visible facial difference and a hearing disability. Children with my son’s condition struggle socially and academically, experience higher rates of depression and have to deal with dick behaviour from peer-aged bullies and insensitive adults on a daily basis. It’s a sobering thought as I send my sensitive little dude out into the world.

So that’s why I’m taking a short intermission from the inane rants I usually post to talk about Craniofacial Awareness Month, because no one really knows what this shit is like until they’ve been there – whether they live with craniofacial anomalies themselves or whether they are friends or family of people with a visible difference.

The month-long event is designed to encourage acceptance for people who have craniofacial differences; according to their tagline its aim is to get people to see that “beyond the face is a heart”. My version is kind of similar but it goes like this: “beyond the face is a mother you DO NOT want to fuck with if you are going to mess with her kid for being different”.

With any luck I’ll never need to intervene. Fingers crossed for my beautiful boy.

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75 thoughts on “Six Words I Never Expected to Say: “My Kid Has a Craniofacial Deformity”

  1. I pity the idiot who says something stupid and crosses you! Your gorgeous boy came to the right mum to defend him if needs be as he grows up (which hopefully you won’t have to). As a side note my daughter had silent reflux too – isn’t it horrible?

    • Oh god it’s the WORST! That actually upset me more than the congenital stuff. I cried so much more for the silent reflux. I’ve only ever cried once about his microtia, and I think that was more my frustration at dealing with the government bureacracy at the time.

  2. I’d never heard of this. Would have been so scary not knowing what it was. Once you know then you have a plan. Good luck to you and your gorgeous boy. And anyone who is insensitive enough to fuck with you cos they’ll need it more.

    • Yeah that was the worst I think – the not knowing. Once we knew what we were dealing with it made things so much easier to process. I’m a problem-solver, and prefer action to stressing out!

  3. Great post and I sure know the feeling of “Surprise here is your baby and here is even a bigger surprise about your son” – and with Raff the surprises kept coming!!
    I know I have said before in my role of work I have taught kids with the same condition as your son and I am confident that your son is going to be able to rock it. Being able to talk about his bone conductor and explain it to his mates (if they even notice) makes a world of difference and most often the other kids are like “oh that’s cool” and go back to being Batman and Iron Man adventures in the playground.

    • Oh mate, kids hey… Always FULL of surprises! And so reassured to hear your experiences with this, because we really are walking into this with no other reference points whatsoever. So much talk of bullying around these days, and it really does make you worry as a parent x

  4. Thanks for sharing this glimpse into your world. So much of this resonated with me. I have to say I also remember hours and hours of googling after we had Gilbert – fun pastime isn’t it?

    I have a friend whose son was born with craniosynostosis so this month is special to her too (I actually have heard about it before – do I get points or a prize for that?)

    BTW, how does it feel actually writing about your kids on your non-mummy blog?

  5. Beautiful post! (Love the realistic reaction – and great to read of how the two of you either as a team). I’ve found so far that, as well as being really honest, kids often are very accepting of differences (or don’t even notice them) and also there’s an increasing recognition that on some level we’re all different (even if some of our differences are more hidden). He sounds like a great kid – how lucky he’s part of your family and how lucky that you all have him! X

    • Thank you – we are so stoked to have our special little dude and he is so much like me sometimes that it’s scary! I totally agree with you about the kids at his preschool – it’s totally no big deal to them, which is awesome x

      • Seeing yourself reflected in your kids is both awesome and terrifying, isn’t it? Enjoy the school / kinder holidays with your boys X

  6. How lucky for your boy to have you as a mum, and for you to have him, you absolute bloody rock star. With you around to show him the way he’ll do just fine in the big world. (I’m actually more worried about any bullies that come his way, because they gonna get their arses Hugzied). Big love to you x

    • Yeah, his big bro is really well-liked at school and has lots of friends. I really hope that having a popular older brother will shield him a little bit in the playground. Just need to stop those two from fighting first. Hahahahhahahhaha!

  7. I had no idea. Thank you for sharing your story and, I hope this will make sense, protecting his. There’s so much we don’t know about each other and what sience might bring us in the future. I hope science brings your son the things he needs. Those first few weeks would have been very tough.

    • Thanks Robyna. We are so excited about all the new technologies for ear reconstruction and implantable hearing aid technology. It’s very positive but also a wee bit overwhelming to have to make these decisions on his behalf. All good though – better to have a lot of choices than none.

  8. Just blew me away lady, not that I should be surprised because the word fierce is just code for mum. There were a couple of kids who went to our school who had obviously physical differences, and I gotta say that despite the principal being generally useless the staff were brilliant. They were always in touch with the teachers and made sure the kids saw so and so as just another student, one who might sometimes just need a little bit of extra help or support. Right through to year twelve the whole grade would look out for these friends, one of whom is now a paralympian, to the schools huge pride.

    Small minded dicks will stare regardless, because some people just don’t possess empathy. But I know that you will give your son the tools so that they can’t hurt him.

    Great post, education is vital. And I think they should use your tag line. Xxx

    (Oh yeah, it’s ana74x here, finally got that Bad Mum blog up.)

    • Thank you – just followed and have the tab open to have a read later on today. Congrats on the new blog!! You’ve just touched on one of my biggest trepidations as well – useless school bureaucracy. Luckily we live in a really small community and my experience of the school with my older son has been nothing but positive. Hahaha I’m also not the sort of person who would be shy about making my feelings known if I thought they were dropping the ball with my kid. Be a useless dick at your own risk, Principal…

      • Small is definitely better because the kids all go through school knowing everyone and anyone with some differences is just accepted from day one, like you said small kids are the best at accepting.

  9. I had no idea. No idea whatsoever. But now I know and I love this post the hardest out of all your posts. I felt all the feels as a mum just reading it. Thank you for making me aware. And all the best for your little boy. I hope he thrives at home and at school. Praying for super awesome friends as well who accept him just as he is. xxx

  10. I actually know of one other old friend who has a daughter with the same condition. She was on the news a while back when they talked 3D printed ears.
    Any kid of yours is bound to be a cheeky little bugger who will have a smack down ready for anyone who makes fun of him- hopefully he never needs to use it!

  11. Thank you so much for being so candid about this – it’s something I’ve never heard of but seriously, the hospital couldn’t give advice? – not good enough at all. If anyone dares mess with your beautiful boy they’ll not only have you to answer to – but the lot of us. x x

  12. There is no way I would mess with your kid!!! Boom! Always telling it like it is and making it real; not just a coughed up brochure like message. Brilliant. Thanks for the info that I had NFI about.

  13. I had no idea Melissa and I don’t suppose we have idea what’s going on in the lives of others (and we shouldn’t presume we do).

    I hope Craniofacial Awareness month gets the attention it deserves!

    • To be fair, I play my cards pretty close to my chest and it’s not something I talk much about on the blog so I think that this has come as a surprise to quite a few people. Hahhaha I’m so bad at this!

  14. Spooky, I just had someone tell me about heir son having a craniofacial issue. It must be tough to have to deal with a rare condition straight after giving birth. My son has ASD which is a hidden disability and doesn’t show up until later, I thought that was lucky for me. Anyway, good for you to share with the world as people need to know to understand and to be accepting. All kids need their mums at times, your little dude might need some extra help and support – lucky boy has you as his mumma.

  15. He picked the right parents he did! Your son sounds so lovely and I like that he already has a big bro at school. School of course “can” be an issue for some families if the school (hello Principal and support services needed to help kids!) does not come on board in time to help your child as he enrols. I am hopeful as you said, that being in a small community is an advantage but you also want him to have learning support (as required) and these things take time to sort. Happy to chat about things any time even though I am no longer employed as a school principal. D xx

    • Oh Denyse that is such a lovely offer – thank you, and I will definitely take you up on that if I ever need some advoce. That’s very kind of you. I really love our little school and am looking forward to seeing him off to kindgergarten in 2018.

  16. He is so lucky to have you as his Mum. I’m so sick of people asking me whether I am hoping for a girl [as we have two boys}. We had a baby, to have a baby. Fingers crossed our baby is happy and healthy. We just want our babies to grow up with as little crappiness thrown in their face as possible – and the world seems to be full of school bullies who weren’t given enough love or manners at home and jackass adults {probably from the same families}. I’d love to share this post as part of the ‘Ultimate Rabbit Hole’ link up xo

    • Absolutely! That perspective is such an important thing to have. We’ve always been big on modelling kindness and empathy and courtesy to the boys, so I hope that sticks with them as they grow older. And thank you for sharing – much appreciated x

  17. Wow, I’d never even heard of this before. Thank you for sharing and I’m sending lots of positive vibes and strength to your son and your family now and in the future

  18. Bless his little heart. This story touches me so deeply and it is just such a blessing that he has parents the calibre of you and your super-googling husband. That you have had to navigate your way through this yourselves is such a credit to you. I am sure he will have a bright future while ever you’re in his corner (goes without saying) and I wish all of you, all the very best x

    • Thank you so much for those kind words. The super-googler and I felt like we were flying blind at first but have a much better idea about the ways to support him now, but it was a very steep learning curve!

  19. I love this post, honest and beautiful. I don’t want to tell you it’ll all be fine and there’s nothing to worry about, but I dated a guy for years who was born with this condition. He is highly intelligent, articulate, a lawyer who is actually doing plenty of good and fighting for the little guy, extremely resilient and one of the most caring and generous men I know. I only mention this because it’s certainly has not held him back. And with you in your little guys corner, well I doubt his condition will hold him back either!

    • Oh that is so wonderful to hear! You can’t help but worry when it comes to your kids and I always love hearing success stories (for lack of a better phrase) from people who have grown up with this condition. Thank you so much for sharing x

  20. I remember reading your first post and totally falling for your fierce, tough as nails but soft soft on the inside, mama bear style. The way you write (and at the same time educate) about your experience in this post is beautiful and moving, and shows just how much awesomeness this part of life brings out in you. Thank you for shedding a light on something I would otherwise know nothing about. I’m sure it’s no easy ride, but your love for your boy(s) is so strong it makes all the shit you go through worth it.

  21. What a Lion Mum you are – your little guy will really be Ok with you roaring at anyone who crosses his path. Thinking of you guys with the road ahead of surgeries and surviving the schoolyard. I so reckon the 3D printed ears will be not far around the corner – I did a story recently on a researcher at Griffith University bio-printing the scaffolds of jawbones so patients can grow their own jaws back.

  22. Our kids were fundraising last term for a girl with the same thing. She is off to the States for an operation, a final operation I think. Those first few days in hospital must have been as frustrating as all hell not knowing what it was exactly. I’m a failed mummy blogger, my kids said they’d sue if I mentioned their real names and have me taken out if I accidentally posted a photo of them. God it’s tempting.

  23. Wow, such a tough road you’ve all traveled so far, and it has a lot further to go. I think you’re son is going to make his stamp on the world though. I think kids are far more accepting of difference today, and with the right friends, the biggest hurdle will be his opinion of himself. With you and your husband on his side, he’s going to blitz it and create an amazing life for himself.

  24. I love your snark more than life itself but this post was special. I really see you, Mumma. And it’s nice. xxxx

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