Friday, September 17, 2010

This is what worst case feels like

A few months ago, I had taken to putting four Xs on the bottom of emails and text messages.

Before then, I had deliberately chosen the three X-method, to signify my family and the three people in it.

So, at the risk of people thinking I had a strange obsession with Queensland's beer of choice, I went with XXXX.

After next Thursday, I will revert to three Xs.

The amnio did not go well. In fact, it went as worse as could be imagined.

The procedure was fine. It was just like a blood test, and the needle was mercifully really fine. I held my breath more or less the entire time, against doctor's orders, but it really didn't hurt then or after.

The doctor came in to the little side room we had been ushered into after the amnio was done. I thought we would just be signing something or whatever, as we did not expect results for another two days at least.

She told us that she had picked up a serious heart defect - and showed us the ultrasound close-up of the tiny heart, pointing out the gaping space of nothingness where a second valve should have formed.

This, she said, was consistent with Downs Syndrome babies, and she suspected that was what the baby had.

On the drive home, it dawned on me that there was no way in hell she would have mentioned that, before the results came through, if she wasn't almost certain. There is no way she would say that if she had even an inkling that the results may come back normal.

Devastating, numbness, my ears start ringing and I feel like I am going to throw up...but thankfully not too much shock as this ugly seed had been planted almost four weeks ago when we got the first scan, giving me a one in 29 chance of having a baby with Downs Syndrome.

I am that one in 29.

The doctor rang yesterday afternoon to confirm it is Downs Syndrome and it is a boy.

Thankfully we had a few weeks to think about it, and talk about it, so our decision is deceptively simple.

As we drove home I caught sight of some cows and horses in a field and cursed human science for being so advanced, for putting us in this situation, when less primitive animals sort out genetic abnormalities for themselves. Simply, they don't survive, or rarely at least. In the same thought, I praised the same science for giving us such a definitive result so early in the pregnancy.

Apparently we can test the remaining six embryos, even at that early stage, for Downs Syndrome and some other chromosomal abnormalities too. It costs a lot more and we don't know what's involved, but we are not sure if we'll do that. I mean, what are the chances that this could happen again?

I put the "why" completely out of my head. Truthfully, it was never there. This is a freak act of nature, and some bloody cruel luck. There was no history of the syndrome in the donor, nor in my family - and there often isn't. These things happen in life.

In the meantime, we go on straightening crooked picture frames on the wall, eating meals at the right times, doing the dishes, having showers at the right times, trying unsuccessfully to sleep so we can forget for a few hours and keep living a life. But it's a zombie's existence.

Some moments, the guilt is palpable...can the little foetus hear us talking about it? Does it feel anything knowing what we are planning? How dare we presume to play god?

Other bigger questions cloud our conscience...and they are ones we may never know answers to. How are we to regard this thing? Is it human, with a personality, a life force, a heartbeat and a happy existence ahead of it? There are as many yeses as there are nos.

At this moment, neither T or I want to see the baby when I give birth next week. It will be tiny, about 14 cms and its head less than a golf ball in size. Apparently I will feel something like bad period pain and when the pain stops, that is usually a sign that it has come out.

I will be almost 17 weeks when it happens. I will know when it is happening, which is better than a lot of women who have sudden miscarriages.

We don't feel, at the moment, that it is something we want wrapped in a blanket that we can hold and look at. Honestly, I just want it out. It will leave a lasting imprint on our lives forever, I don't need a visual to add to the trauma.

I had trouble getting off to sleep last night as I suddenly thought something should be done to honour this little one's memory. But what? Not a funeral, no big occasion. But what? I don't know.

I am mentally trying to detach as much as I can, a process I started four weeks ago. It will hurt too much if I bond more than I already have done. Thankfully, our OBGYN said you don't normally feel kicking until about 19 weeks.

You hear people say those one day at a time, one foot in front of the other cliches at times like these. But they are cliches for a reason - because they are so common. We are on an emotional yo-yo string right now, never able to predict our reactions.

Seeing Jay wake up all cute and sleepy from an afternoon nap is usually enough to set us both off in floods of sobs which utterly confuse him. But we just give him extra hugs and kisses, squeezing the life out really, while his eyes widen in bewilderment.

He is great to have around at a time like this. He doesn't know what's going on, although we have told him the baby was sick and we have to say goodbye to it soon. Funny, he knew when I was pregnant before we did and when we asked him if the baby was ok, he would say "baby sick" quite a few times. But he is still blissfully Jay, wanting a muffin, wanting to play play-dough, wanting a story, wanting to go to the park. And we do those things not because we feel like it, because we don't, but because of him. And then, when we see him laugh at taking an enormous bite of muffin, or zooming down the slippery dip, we realise how valuable he is. Because he is bringing a smile, or some joy into what seems like a pretty dark, joy-less time right now.

We will be ok, I know it. We have so many good things in our lives. Whether it is the unshakable support of family and friends, the six more chances sitting in storage in Brisbane or the fact that we were privileged to find this out this early, and not at 39 weeks.

Good things are all around. Some days they are harder to find, some days they are impossible to see, but we will get there.


  1. ((HUGS)) I'm so, so sorry. I know it goes no way to helping.

  2. Just want to send you and Tracy and Jay all the love in the universe! it will be okay, you will get there. Em xxoo

  3. Oh my goodness, Bec. I'm so, so sorry for you Tracey and Jay.

    Sending lots of love your way.
    Blythe x

  4. Bec, what terribly bad luck, and devastating news. I am so sorry for this outcome. I wish you all peace in the upcoming weeks and real hope for the future. This is my next test and I am scared as hell of the possibilities. I am so sorry you are there. I wish your little family peace with your decision, a smooth transition through this sad event, and a happy outcome as soon as you are ready to move ahead. My thoughts, prayers and wishes are with you all. x0x0

  5. I read the title of this post in my blog roll. I avoided reading it. I put it off. I didn't want to.
    In fact I've just come over to give you some big big hugs. I have read a little bit, very quickly and couldn't contain the tears.
    I will be thinking of you next week.
    I am so very sorry.

  6. Our thoughts & prayers are with you
    all at this difficult time.
    Much Love,
    Mell, Jules, Kai & growing Baby Blossom

  7. Oh gosh, I'm so sorry.
    Thinking of you.

  8. Bec, Trace and Jay,
    Loving thoughts and vibes go your way...
    Our thoughts are with you and all your experiencing, I know you will find YOUR way to work through this and only you guys will know it, but remember how many people you have behind you, unrelenting, unconditionally always..
    Much love and many hugs
    I know I am sorry just doesnt cut it and take all the pain away, but with all the love and warmth I can gather I send to you all
    Tan and Kiera
    Thinking of you all

  9. Oh Bec and Trace
    I'm so sorry that you have been on the emotional rollercoaster that you have. My thoughts are with you both and that gorgeous son of yours. It's Jay who will help you keep going one step at a time.