Testing times

As some of you who follow me on Instagram will know, we had our first appointment at the recurrent miscarriage clinic a few weeks ago.

And while it’s a bit of a blogger cliché to say ‘a lot of you have been asking: blah blah’, a few of you have been asking how it went. (Thank you, by the way, you’re all lovely). So here’s what’s been going on.

The first thing to say is… well, not much. We don’t really know anything yet – and won’t for a few weeks. The testing process is a fairly drawn out and unsatisfying one. We get three appointments: the first involved a scan and a load of blood tests (literally ten phials of blood. Fun times.) We then have to go back six weeks later to repeat some of the blood tests. And then four weeks after that we get the final assessment of all our results and history with a consultant. That’s when they’ll be able to tell us if there’s any identifiable reason. And, more importantly, if there’s anything they can do about it.

IMG_1078
Actual footage of me post-clinic.

I won’t lie, it is disappointingly protracted. And I can see this disappointment echoed back at me in the faces of the few people I’ve explained it all to in person.

‘So…’ they’ll usually say, not quite sure how to word the question politely, sensitively. ‘Any, err, any answers yet?’

Everyone wears the same expression. The same shy flicker of hope in their eyes. ‘Can they…. tell you anything?’

I hate the effect my answer always has on that expression. I’ve got the spiel down now, but in all the ways I’ve rehearsed it, whatever upbeat contortions I force my voice into, it still kills that little speck of optimism.

‘Not yet,’ I go. ‘It’ll be another ten weeks or so. And even then they might not be able to tell us much. There’s only something they can diagnose in about half of couples who go through this, could still just be bad luck, so you know, fingers crossed…’

God, I’m so not the person you want to be stuck in a corner with at a party, am I?

It kills me, too – how dearly, desperately so many people who know us want to be able to wave a magic wand for us. For the doctors to make it all go away. To fix us.

But the reality is we might not be fixable. It’s hard to hear, I know, but there is no magic wand. No wonder pill. No eureka – a-ha – gotcha moment. No ‘Surprise! The last year has all just been a bad dream, you can wake up now…’

As I understand it, different NHS centres look for slightly different things when it comes to recurrent miscarriage. The main things they look for at ours are structural abnormalities in the womb and ovaries (these, at least, have been ruled out in our case by the scan at the first appointment. Well done, womb.) and various blood clotting disorders. The blood tests I’ve had include: a thromboelastogram test, antiphospholipid antibodies, lupus anticoagulant, Factor V Leiden and prothrombin gene mutation.

They don’t do NK cells testing (for high levels of immune cells called natural killer cells in the uterus lining… the theory being there’s some sort of immune system reaction going on that stops the foetus developing). They also don’t seem to be looking for chromosomal issues – as all the tests have been on me so far, rather than both of us.

One possible reason for recurrent miscarriage is something called a translocation. Basically, some perfectly healthy people can have all the normal chromosomes they need, but one bit is in slightly the wrong place, known as a balanced translocation. This doesn’t cause the carrier any issues, but when they then try to have children – and their chromosomes have to re-arrange themselves with another person’s – the baby can end up with missing or extra bits of genetic information (known as an unbalanced translocation). This means the baby doesn’t develop properly, which can result in a miscarriage.

Slide1Anyway, tests for this are now top of my list of things to ask the consultant about. (If you are going through similar sorts of testing, my advice is to make a list of questions in advance. I forgot to do this, and, of course, when asked if we had any questions at our appointment, my mind went blank and fuzzy).

The key thing to hold into in all of this – as I’ve tried to explain to crestfallen well-wishers – is that whether or not they can find a ‘reason’ for the miscarriages, our odds of eventually having a healthy baby are roughly the same. Around 70 per cent of couples like us will go on to have a successful pregnancy, is what I’ve read.

And interestingly, research suggests that simply being under the supervision of a recurrent miscarriage clinic/early pregnancy unit (next time round, they’ll see us every two weeks for early scans) seems to improve the odds, even if you have no other treatment, though no one quite knows why that should be.

The worst part of the whole process, if I’m honest, is not being able to try to get pregnant while we wait for the results. While I know in my logical brain that the pause has been a good thing for us – useful breathing space – I also feel dogged by aimlessness. By a fear that we’re wasting time (and viable eggs). And consumed by grief that is just that bit greyer without the glimmer of light at the end of each month; the shimmering, heart-in-mouth promise that we could be pregnant again.

In short, it can feel impossible to keep going, and it can feel impossible to stop.

6 Comments

  1. Good luck with the testing. I’d definitely look into the NK testing. We paid private for it and went to Coventry. Although we were fine, they prescribed progesterone to take. It was the only difference I made with this pregnancy and I’m now 31 weeks pregnant. Although my progesterone has been tested in a non pregnant state, it hadn’t been tested when I was pregnant so we never know if that was the issue.

    Best of luck, the testing and waiting is horrible but hopefully you feel a little more like you’re doing something to help your journey xx

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