Tuesday, April 29, 2014

Day 1666 - Surgery

Have you ever heard of Pectus Excavatum? 


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Who's had a child go through surgery? Were you scared?  I'm trying so hard not to be. 

I haven't talked much about Tahlia's surgery because it's tricky and delicate and personal to her.  Other than to mention she has had to give up cheerleading for 2-3 years because of the surgery as she is not allowed any contact sport for that amount of time. And besides, I really didn't want to dwell on it too much because as a Mum I am concerned.  This isn't a small operation.

But it's surgery week.  So it's time to talk.



You see, Tahlia has something called Pectus Excavatum which basically means her sternum has collapsed and she has a big hole in her chest.  Some people call it "sunken chest" or "hollow chest". This not only brings with it a physical abnormality, but also has psychological implications. Not to mention the fact that it can put pressure on her heart and lungs.  It will not rectify itself.  It is probable it will get worse. So tomorrow she has an operation where they insert a curved steel bar in behind her sternum (a Nuss Bar) to push her bones back to where they should be.  The bar stays in for 2-3 years at which point it will be removed.

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Some people have it at birth, but for others the abnormality often presents itself at puberty.  Tahlia has always known she's had a small "dent" in her sternum (it was so small that I never noticed it) but once she hit her teens her chest basically caved in.  As you can imagine this was quite a shock.  So we whisked her off to the doctor who sent her to a cardiothoracic surgeon in Sydney.

He said he could fix it.  He told us all about it and advised it wasn't overly uncommon.  If you talk to people there is often someone who knows someone who knows someone with this complication. He explained that fourteen is the optimal age to get this procedure done as her bones are still flexible and malleable enough for the procedure to work.  Tahlia made the decision on the spot that she wanted the surgery.  We have supported that decision.

So here we are.  She and I are in Sydney today awaiting confirmation from the hospital as to what time they need us to arrive.  She will need 4-5 days in hospital as she will require close observation and intravenous pain relief.  Apparently the pain will be severe.  No mother wants to see their child in that sort of pain.  No mother wants a metal rod being poked and prodded around their child's heart and lungs.  No mother wants to watch their kid being wheeled into surgery.

But every mum wants their child to feel good about themselves and to feel proud in their own body.

So while I am scared and concerned  ... did I mention scared?  ... I know that the surgery is the best decision.  But I still feel like I am sitting outside my body watching it all from a distance.  It all just feels "odd" and "unreal".

The events of this week ... all of them .. make me feel like I am living in an alternative universe.

Which isn't a bad thing ... because compartmentalising it that way is how I cope.




Note: I actually didn't want to write about this because I am conscious that this is Tahlia's story, her body, her battle. But after much deliberation and discussion we have decided to share the story because there may be others out there with the same condition who don't realise it can be fixed.  Teens out there who are feeling bad about themselves not knowing it is not as uncommon as they think and that there are doctors who specialise in the reconstruction.  I have Tahlia's full support for this post. 

If you Google "Pectus Excavatum" you will find pictures on what this condition looks like.  

11 comments :

  1. Poor little thing. I do know adults with this condition but I can imagine it would be fairly bad for a teenage girl. I hope the surgery goes well and she isn't in too much pain.

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  2. Poor Tahlia, our prayers and thoughts are with you through this surgery. I know how hard it is to see your kids go to have operations. Knock on wood, they never have to get anything this major done. Although Morgan may have to get major ear surgery, gingers crossed he won't.

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  3. Best of luck to you and Tahlia with the surgery. I don't know anything about pectus excavatum, but I'm a veteran at the whole surgery thing with Miss 7 now up to somewhere in the realm of 17 operations so I can relate to the feelings of worry and helplessness and the need to compartmentalise. I don't know which hospital Tahlia is having it done at but if it's one of the two kids' hospitals, I can tell you they are both absolutely brilliant. Big hugs xx

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  4. oh hun, I have never heard of it but it doesn't sound pleasant and you and Tahlia will be in my thoughts over the next week as she gets through this surgery and recovery. Of course you are scared, but you are mum, you will be strong for her! xoxo

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  5. It is only natural for a mum to be concerned and scared for her daughter. I have never heard about this before and will monitor my own girls with their growth and development. I've heard of back rods but not what your daughter is going to have. Thank you for sharing about it. I will be praying for you and Tahlia tomorrow and for the rest of the week. I hope the pain killers do their thing and that there are no complications. x

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  6. Sending you lots of love and hugs. I hope that the surgery goes well and Tahlia recovers well xx

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  7. Thank you for sharing Leanne. I hope by now she is out and healing well, and not in too much pain.
    We've done surgeries before, but nothing this serious. I can totally understand you're worried about it.
    Thinking of you both xx

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  8. My goodness, so that is happening today, my heart and strength to you both, surgery is so very scary, just went through a major kidney op with my 4yo. Wishing Tahlia a speedy recovery x

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  9. Best wishes to you both. Hope he recovery is a quick one :) Hugs to you.

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  10. Thinking of you and Tahlia. Such a big deal and very brave of her to let you share the story. She sounds like she has the courage and maturity to handle her recovery from surgery and the disappointment of having to give up cheerleading. All the best.

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  11. I hope everything went well for Tahlia, Leanne. She's lucky to have you by her side, no doubt she'll need you to lean on for a little while. They never stop being our "babies" do they? xx

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