Monday, August 30, 2010

Scare

Hello again, apologies for the absence blah blah blah.
It can partly be explained away by a week away from computers in Airlie Beach - lovely! And partly due to bone laziness.

Anyway, here I am, adopting a quality-over-quantity approach to blogging.

I am 13 weeks and two days today and just noticed the first signs of a baby bump today. That black skirt was a little more snug and that black top I wore to work rode up A LOT higher than usual.

We have had our first appointment with our obstetrician and our first proper scan.

And here is where the scary parts start.

I will just come right out and say it. According to the results of the 12-week nuchal translucency scan we had a week and a half ago, I have a one in 29 chance of having a baby with Downs Syndrome.

One in 29.

You know me, I had burst into tears as soon as we were free from the radiographer's dimly lit office...having sat through a 20-minute explanation of what those results actually meant.

Yes, the radiographer said, it was high risk and concerning; but I could also be one of the 28 women who would have a normal, healthy baby.

But what if I'm not?

Yes, the nasal bone was present, and in 85% of Downs babies, the nasal bone is absent.

But what about the 15% of Downs babies who obviously have a nasal bone?

Yes my blood biochemistry levels were good and normal, but my baby's nuchal measurement (the skin at the back of the neck) was too big.

Damn numbers, I have always, always hated them.

It was so damn unexpected. Like a blood test, I was seriously expecting to have the scan, get a nice clean one in 800 result and get on with life. But while it was awesome to see my little 12-week-old baby squirming and flitting about - and to see amazing details like a jawbone, nose and limbs - the gloss of the moment was certainly tarnished by that devastating news.

This may sound callous, and I expect to be judged even though it is an intensely personal decision, but if the results of an amniocentesis that we will have in three weeks come back positive, T and I will not go ahead with the pregnancy.

And that horrific eventuality (a positive result) gives rise to a whole host of truly gut-wrenching - and very negative - consequences; ones I won't go into here because I don't want to spend any more time agonising over an experience we may not yet have to endure.

T and I both know we do not have what magic qualities it takes to raise a child with Downs Syndrome. Thank god we are both on the same page. I know people with kids who have Downs say the same thing, but that they just got on with it and did their best, but I do not want to go down that path. All I keep thinking about is the child's quality of life, their longevity of life, the strain it will put on our relationships, finances, emotions...all the negatives. And I am sure there are positives, but I don't have the strength to wade through what I assume to be 99 negatives to reach one positive. I can see how that could be selfish, heartless, whatever...but it is how I feel.

I know I will suffer a lot of guilt if that is what ends up happening, particularly as this was an IVF pregnancy, but I suspect my family will suffer a lot more from the alternative.

Wow, it sounds really callous to type it all up in stark black and white, but there is the harsh truth of it.

In the meantime, it's a matter of desperately avoiding the issue in my mind. The holiday helped me succeed at that, but now I am home, I find it clouding my thoughts more often.

I am someone who worries about things I cannot change...I know it is unncessary, and yet I do it constantly. But I have really forced myself to change tack with this.

If I dwell on this, or worry all the time, I will literally go mad and no doubt harm the baby. The fact is, we won't know for sure until about three weeks' time. (The results of an amnio normally take two weeks (!) but you can pay more for a FISH test, which we will be doing, and you get a result in two days). Yes, I am sweating on that result - of course, we all are - but we know when we can get that news and it is not negotiable.

So, please, any positive vibes you got - send them my way!

9 comments:

  1. hey, sending positive vibes and no judgement. This is a tough decision and it may look callous in black and white but I know that a LOT of thought and heartache is behind the typing. It's your decision.
    Good luck for a good result from the FISH

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  2. No judgement here either.

    Sending lots of love and good vibes your way.

    I'll be thinking of you.
    xo
    Sass

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  3. Thanks peeps, I appreciate your thoughts and words. Booked in the amnio today - and it's done at 15 weeks, not 16 (must have misheard that one). AND, freaking out majorly as it is done with no anaesthetic. That's right, they are sticking a needle into my abdomen through my belly without a jot of pain relief. I think I will ring and ask if I can have at least that gel numbing stuff they have...that is crazy!

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  4. Think you can escape a big fat hug from me? Not a chance amazing lady x

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  5. Hey Bec, my thoughts are with you and Tracy. If it is any consulation, with my youngest, Flynn, I was also told that my baby had a chance of having Downs through the same trinuchal fold on the back of the neck. From memory I think it is meant to be .2. My son's was somthing ridiculous like 8. I had the amnio, the wait, the angst etc etc. The longer the wait, apparently the better the odds of it not being downs. We received a phhone call eight days later to say all was well and it wasn't Downs. When I mention this to the nurse, she turned to me and said "you know it is only a theory and it actually is not proven" - well, I could have punched that doctor fair and square in the kisser for the trauma (yes it is traumatic) he put us through!
    Everyone's choice is different, and while you might feel like the world is judging you - we all can empathise with the decision that you and Tracy are facing.
    Best of luck!
    Nina

    PS - that massive tri-nuchal fold turned out to be a baby boy the size of two year old!!

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  6. Hey Bec
    I also am sending you and T good vibes...no judgement here my friend. I would make the same decision if i was in that situation. This medical technology has been developed for this very reason, so that we have the choice.
    good luck, hugs Jack
    (I am a complete chicken shit when it comes to needles, the very thought makes me break out in a cold sweat, ask for the numbing cream at the chemist :D)

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  7. Wow Bec,
    This is big stuff, and how absolutely gutsy of you to share your story.

    What a painful and daunting decision, love and light to you both,

    love Denise x

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  8. NO judgement here!

    And this is coming from someone whose older brother has Downs Syndrome. I love him, but I think it's wonderful that if you don't feel you're up for the challenge you can choose. My brother has always been loved and supported, but it is NOT easy!

    Maybe all this debate won't matter; I certainly hope all comes out well! (HUGS))

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  9. Good Luck Bec.

    Fingers crossed that it all works out well and you won't be faced with the heart-wrenching choice. You're very brave to be so honest and open and the comments above are evidence that noone is judging you. Do what's right for you, your relationship and your little family.

    All the best,
    Dru xx

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