And so, we meet again, 12 weeks

Almost 12 weeks. Yeep, do I dare get excited? Well certainly not until we cross this bloody monumental nuchal scan barrier. I have it tomorrow, and we find out the results Wednesday.

Here, by way of a recap, is the first entry of my journal over at StorkNet. Give it a few days before I am loaded on there, allowing for time difference and all. Back to regular programming later this week. In the meantime, good vibes welcome from you all!


TWELVE WEEKS WAS ALWAYSthe standard mark most pregnant women waited for before they announced the news publicly, right? The “safe” point after which all would be well? First trimester over = happy days!

We thought so too, until last year. Until our 12-week scan revealed Down Syndrome and a serious heart defect...that ultimately resulted in us losing the baby. Our hearts broke as we made the call to terminate at 16 weeks and four days – not a decision everyone would agree with, but one that thankfully my partner Tracey and I were in unison about. It was partly that we knew we weren’t strong enough to cope and partly that we were worried about the strain it would place on our family, but mostly we felt paralysed with grief at the thought of knowingly bringing a new little life into the world that would be burdened with such a poor quality of life.

My pregnancy was too far advanced for a hospital procedure that would have mercifully knocked me out with a general anaesthetic, so I was induced. I won’t go into any details about those 26 hours...funny, I think I have blocked many of them out anyway (even though they are here on this blog...one entry I have real trouble re-visiting). But even though I have erased them from my mind, they aren’t permanently deleted like you can do with emails and trash in your computer recycle bin.

The memories are like the lead pencil impressions left carved on paper even after you try so hard to rub and rub them out. Just like this is something we won’t get over, that is something we will never truly forget.

I am sorry to dwell on such maudlin matters in this, my first entry. But I need you to know some of the back story, because unfortunately – while I wish it wouldn’t – it indelibly taints every second of this pregnancy. Whether that is through pretty regular bouts of uncertainty, anxiety and stressful moments that take my breath away, or through seemingly unstoppable tears at 2.30am while I lie awake, unable to sleep, thinking. “What if it happens again?”

I try and think of the baby growing inside me and remember I have to protect it and nurture it with love and positivity, but sometimes the damn worry wins.

So, that’s where we find ourselves at this very moment. Tomorrow I will have a 12-week scan. The same procedure that last time sparked such a catastrophic crumbling of our world. The same scan that triggered such tragedy last August.

I am petrified. What if it happens again?

I saw our OBGYN, the same one we had last time, last week. It was our first appointment back, as we had been to another IVF doctor in Brisbane to this point. I was shocked to hear what he had to say. As I sat down he, knowing my history, asked me if I was thinking about going straight for an amnio. I admitted that thought had not crossed my mind at all. He said in his experience, women who had had a similar experience just wanted that peace of mind and immediately by-passed the nuchal, which is purely indicative and educated guesswork really, whereas the amnio is 100% clear.

Instantly I felt unprepared and silly for not considering this. But then I said that I actually did want to do the nuchal. Firstly, it is less intrusive and less risky. And why have an amnio if you don’t need it?

Then he shocked me for a second time. He said that because of my history, the ratio used to calculate the likelihood of me having another Downs baby was reduced. So instead of a woman my age starting at a point of one in 400, I start at one in 100.

Holy shit. I was gobsmacked.

To this point, we had been convinced that Downs was a genetic anomaly. It is not hereditary and even if both sides of the tree have zero family history with the syndrome, for some random reason, it can strike. It is inexplicable and impossible to trace/predict. Even our IVF doctor said we would be bloody unlucky for this terrible lightning to strike in the same place twice. And yet, the possibility now seemed to be opening up.

So, with this in mind, I am now readying myself for what I believe to be an almost-certain amnio. Especially given my numbers are going to be so drastically skewed downwards. But, on the other hand, we won’t know until we know. And even then we won't know for certain - the nuchal result is just a guide. I just hope my number is high, and there is no room for doubt over whether or not we need an amnio.

Roll on Wednesday, that's when we can get the results.

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!