Just when you think you're safely out of the danger zone (if such a thing exists). Just when we finally began allowing ourselves to feel
really hopeful and let unadulterated happiness in. Just when we were starting to breath again.
We got the bloodwork results from our combined NT screening (after the nuchal fold itself measuring perfectly) and they show an extremely high risk of Down's syndrome; 1:35. Given my age, I suppose we knew there was a heightened risk, but it still broke me to see H, overcome with tears of fear and exhaustion, look at me and say '
I knew we shouldn't have let ourselves hope'.
They asked us to come in right away to discuss things with the screening midwife. When we were ushered into one of those 'nice' hospital rooms with the sofas and tea making facilities and boxes of tissues, I think both H and I were petrified; those are the kinds of places you go to hear the Very Bad News. The specialist midwife was lovely and patient and answered all of our questions. They are not at this point worried about any other, more dangerous trisomies, which should already have been picked up on u/s. We had an appointment with our Maternal Fetal Medicine specialist booked for Friday anyway, so after this encounter it was good to have the extra time for discussion and to go over any questions we still had. Not that we managed to really be coherent enough to compose any, or focussed enough to really take in the answers that were proffered. We did, however, get a completely unsolicited look at the little seedling again; we weren't expecting this, having just had a scan a week earlier, but Dr B offered and who were we to decline? (Have I mentioned that I'm a little bit in love with our doctor?) And there s/he was, bouncing around without a care in the world, looking pumped up on too much caffeine or sugary cereal for all the vigorous jumping around it was doing. This time we got to hear the heartbeat too. Amazing. This is one strong baby; I just feel that.
It's been a very tumultuous few days. I've gone from devastated and terrified that any heightened risk factors might put this pregnancy in jeopardy, to a sense of 'ok, we can do this', to utter confusion over what I can, should, might be feeling.
Part of that has to do with all the
what next? issues we now have to consider. We were offered further screening; we're too late in the pregnancy for a CVS but our options now include an amniocentesis and level two genetic anomaly scan. (And before anyone suggests it, no, the MaterniT21 test is not available here in the UK, even privately. From a bioethical perspective - to do more with the
history of scandal surrounding the company that holds the patent rather than the test per se - I am not sure how we'd feel about it anyway.)
Given our history of loss and how hard we've struggled to get here, not to mention how protective we feel of the little seedling, it would feel crazy to undergo any testing that puts us at risk of miscarriage, no matter how small. So I don't think we'll pursue an amnio. We can be booked in for a high level genetic scan carried out by a specialist (rather than just a technician) at 19 weeks. This might detect any 'soft markers' for Down's, but like the combined screening of NT scan and bloodwork, it can give you only a probability; it's not a diagnostic test.
Even if we got a conclusive answer from an amnio, we wouldn't consider a termination because of a diagnosis of Down's syndrome. It couldn't possibly make us love our baby any less, and really, as two highly educated people without any other children to demand our time and attention, we are pretty well placed to cope with such an eventuality and give our little seedling the best possible upbringing regardless of its level of ability. We've fought too hard to get here. So the invasive, risky procedures seem pointless, except insofar as perhaps preparing us for that eventuality.
Of course, there's a big part of me that wants to crumple up on the floor and howl, to indulge in all kinds of
I knew it thinking about how we were never going to be allowed the true, simple joys of pregnancy without fear and complication. If this was always going to be true anyway, given our history, it's now that much moreso. No stress-free, happy pregnancy here. But actually, I don't want to come across all
Why me?, because really, why not me? I know I'm no one special. Although it can be galling to watch how some people (usually the nasty ones, or so it seems) can breeze through life unscathed and blissfully unaware of the harsher difficulties that some of us face in more than our fair share, the truth is, people get shitty breaks all the time. This is far from the worst among them.
For months, years, I lamented and implored the fertility gods to just allow us
one chance at a healthy, happy, living baby, and nothing has fundamentally changed in that. Our little seedling is still that chance. We're still lucky beyond measure, and best of all,
we know it.
I'm still processing all this, and don't yet know what I think or feel, but one thing is true: this is not the worst news. Even if it may not look as I expected it to look when I have often repeated that simple, comforting incantation, somehow I still have to believe that
everything is going to be alright. Screw it; I'm going to keep hoping.