Superstition and pseudo-evidence-based hysteria: What recurrent miscarriage has done to my rational mind.

Written 22nd November, 2014.

We keep marching forward, one day at a time. What else can we do? Neither of us are ready yet to think about the possibility that there might be an actual baby at the end of all this. All of our utterances about short, medium or long term planning are qualified with ‘Depending on what’s going on, of course’. I know it annoys him, because he thinks that I think that he’s forgotten that there’s something going on. Or potentially going on. I qualify my qualifications by hastily explaining that, no, I don’t think he’s forgotten or unaware, but, rather, this is my way of not ‘jinxing’ things by foolishly and naively hoping for even one second that it isn’t all going to go terribly wrong again, again. Again.

Rationally, every week that passes means that the chances of success are just that little bit higher. We have now had a ‘good’ scan (i.e. one where the baby hasn’t died) at 8.3 weeks. Anecdotal (perhaps it’s also scientific; the people who I have heard say it say that they have heard it from doctors) evidence says that 8 weeks is a major milestone, as the baby moves from the embryonic to the foetal stage of development. Lots of the things that could have gone wrong have, by now, gone right. Or at least well enough to not shut the whole enterprise of life down. This is encouraging. What’s possibly slightly less encouraging is that that means we’ve had 3 days’ growth in 6 actual days. Funnily enough, I don’t find that I’m too freaked out by this, as I did feel that last week’s scan declaring us to be 8 weeks on the nose was rather over ambitious. I had thought we were more like 7 and a half. Mind you, we were 6.1 only 8 days prior to that. I guess it’s fractions of millimetres they’re measuring, and it’s different people each time making the clicks, so there’s going to be some room for some wriggle room. Everyone seems happy, anyway, and the sonographer didn’t make any mention of ‘slow growth’ on the report. And, actually, 8.3 does fit in almost exactly with my calculated dates. I need to stop looking for things to worry about.

The biggest moment of (post traumatic) insanity came when we realised that we were going to be scanned by The Sonographer Of Doom. I’m sure she’s absolutely lovely, but I can still remember her words almost three years ago when she was scanning me and said ‘Its not good news, I’m afraid.’. I know that there’s no easy was of saying it, but it was like being punched in the guts, and we both remember it, and associate it with her. I silently panic, as if there is, actually, some sort of mystical force at work in the universe (which I don’t believe that there is), and that it’s about to get me again.

Happily, it turns out that it isn’t. The lone magpie I saw on the roundabout on the way here fails again. Quiet my dark superstitious, paranoid mind. She even gave us a photo. He wasn’t too keen on getting it, because, I think, he’s not ready to breathe out and relax, but I thought it might be nice to have (and then immediately thought that it might bring some inexplicable bad luck and wondered whether I was tempting fate by accepting it). Whatever his reasons for hesitating to take the pictre, he says it isn’t because he thinks it’s bad luck. In truth, if we got a scan picture every time we went for a scan, we could have papered the cloakroom toilet with them by now. Given my aversion to seeing the things on social media, I’m not really sure what I’m going to do with it, anyway. It doesn’t even look like anything, except perhaps a potato from space.

Afterwards, we need to negotiate the next scan appointment. The EPU clinic is busy and we are seen to be making good progress. Can we go to 12 weeks? No. I explain that #3 died within days of a 9 week ‘good’ scan, which had seemed perfectly healthy. Worse, the progesterone I was taking (and am taking again), masked any sign that anything had gone wrong and it wasn’t discovered until 13 weeks at the ‘official’ scan. I also explain that I don’t want to have to wait until the ‘official’ scan because the way they have the rooms set up, with large monitors up on the wall in the corner, means that you get an excellent view of your deceased baby (in our case, as a screen grab, left up there even after the scan had been completed) starring down at you from the corner of the room whilst they send someone to fetch the leaflets. This, presumably is in case you forget what’s happened. Oh, and the delivery of the news on that occasion was truly exceptional: ‘Oh, there should be a baby in there.’ No shit?! And me here for my 12 week scan, and all… It’s enough to make you wonder whether they train some of these sonographers in how to give bad news. (Let me qualify this, MOST are EXCELLENT, but when they aren’t, they really aren’t).

I’ve made my case, and the clinic nurse is going to see what she can do. But I do need to book in with a midwife, she tells me. I don’t want to do this, either. More jinxing and bad luck. I don’t like having to text them when it all goes wrong, I plead. You won’t get your 12 week scan in time if you don’t, I am told, in no uncertain terms. Check mate. So, that’s all now booked for Tuesday. It will take about a million years to recount my history. I hope she knows how to ‘manage’ me and my craziness…

All the other signs are encouraging. I permanently feel as though I’ve just disembarked from a Waltzer, and I’m totally knackered. All good, although, as we know, meaningless, really. Still, we must keep moving forward, one day, one week at a time. Baby steps.

Time and money: just one of those things?

Written 15th November, 2014

After another week with very occasional light spotting, my nerves could take it no longer. The two weeks between the 6 week and the 8 week scan, given that babies #1 and #2 went between 6-7 weeks after seeing a heartbeat (normally regarded as a sign that all is on track and well) was making me anxious enough; the spotting was pushing me over the edge. I phoned the EPU and left a message asking for advice. They offered me an extra reassurance scan yesterday. I must say, for all my reservations about going back there, they have been very good to me so far. (Although my husband hates the car park with a passion because the card reader is out of order and the notes feeder doesn’t give change. It’s been like this for 3 years…).

Despite instigating this extra scan myself, I was filled with feelings of dread and doom from the moment it was booked. One of my current problems is that I get tired very early in the evening and end up going to bed at about 9-9:30, but I also get very hungry, so hungry I can’t ignore it, which wakes me up in the middle of the night (I’m a secret night-time yogurt eater). As a result of this combination of symptoms and the stress of the anticipation of the scan, I was laying away at 3 am the two night preceding the appointment wondering how the hell I was going to cope if it all went wrong again. How would I manage work? I am supposed to be leading a school trip next week, who will take the kids? How will I get everything sorted? How will I get the right care sorted for my ERPC, should I need one? Will I trust local services to do it, or will I run away to another hospital? Too many thoughts, driving me mad. I am not enjoying the psychological legacy of three missed miscarriages.

As it turns out, we have actually made time since last week’s scan. We’ve gone from 6.1 weeks (where I thought I was 6.3, and hence assumed all kinds of disasters) to 8.0 on the button, which is about 3 days ahead of where I expected to be. Of course, it’s a matter of fractions of millimeters at this stage, so no-one is concerned. The little heart is fluttering away (and so is the big one!), and we can say that another milestone has been reached. Phew! We were in and out in under 10 minutes today, and even managed to have a tummy scan rather than the undignified internal one (is it weird that I felt slightly cheated? I’m used to getting a closer look…). Although we are not even close to the edge of the woods yet, we are past ‘danger point #1’, and I am feeling encouraged (for now).

What’s the difference? I’m putting it down to the ‘magical’ combination of progesterone (400mg, twice daily) and heparin (those dreaded daily pricks – my husband does them – I can’t seem to find the nerve). I am so grateful to the team at Coventry for putting me on this course of treatment (http://www.uhcw.nhs.uk/our-services/a-z-of-services/consultants?cID=341). I believe that, without it, I would not have got past 7 weeks again. I am more convinced than ever that have not experienced bad luck, but suffered from a failure to properly investigate, diagnose and treat an underlying medical problem. Whilst I realise that funding is a serious issue, I also wonder, on balance, how much has been spent on the 6 lots of surgery I have undergone. I can never know, but my instincts tell me that the treatment plan I am on now might have saved #2.

I still think that taking aspirin as a precautionary measure prior to conceiving #3 may have interfered with implantation sufficiently to allow a Turner Syndrome baby to take hold, and, I wonder whether, had I not been taking it whether that one would have implanted at all. This is all speculation, of course. Lots more medical research is needed with much bigger, scientifically regulated, double blind trials to answers these questions once and for all. I’m very pleased to read that Tommy’s are going to launch a new early miscarriage research centre (https://www.tommys.org/new-research-centre). I expect many of my hunches will be borne out in the coming years, and couples won’t have to endure 3 miscarriages and be fobbed off with the ‘bad luck’ line in years to come. Getting real answers, sooner, if the tests are quick and reliable, and the appropriate treatment available will save a great deal of time and heartache for a lot of couples. I also wish that the long awaited results of the PROMISE progesterone trial (http://www.miscarriageassociation.org.uk/information/research/the-promise-trial/) would hurry up; it would be nice to see what the actual research says about at least some of the medication I’m currently taking!

As for me, I’m enjoying the mental relief I got from the encouraging scan of yesterday for a while longer before new scan doom sets in for next week. We know it can still go wrong…

Am I Pregnant? An Obsessive’s Guide

Fed up of symptom spotting? Here’s a guide for the ladies who’ve googled it all.

1. Check your calendar, even though you are absolutely 100% certain beyond all doubt where you are in your cycle. If using the one on your phone or any other touch screen device, curse every time your hovering finger touches the screen and opens up a particular date because this makes you lose count. Vow to print off a paper calendar that you can circle and annotate with a red pen.

2. Get paranoid that a friend or family member will find your annotated fertility calendar and hide it in the wardrobe.

3. Unable to make sense of your annotations, switch to a fertility app. Find that it contains old data from a pre miscarriage cycle, which skews this cycle’s data.

4. Consider deleting the old data. Feel very guilty because it’s like deleting the memory of your baby, in your crazy head.

5. Get a grip and delete old data. Find that there is not enough historic data in the app to give you any useful clues about current fertility status.

6. Give up on app and decide to go with gut feeling.

7. Realise you have absolutely no confidence in your gut feelings.

8. Google ‘Early Pregnancy Symptoms’. Find you have hardly any of them. Google ‘Very Early Pregnancy Symptoms’.

9. Wonder whether last week’s hang over was morning sickness.

10. Concentrate on boobs to assess whether they hurt or not. Run up and down a few flights of stairs. Jiggle a bit and poke them when no-one is looking.

11. Become convinced that you are pregnant because your boobs hurt.

12. Review the week when you think you ovulated in forensic detail in your mind. Convince yourself that you a) must be and b) cannot possibly be pregnant.

13. Determine that you are 8 dpo (days post ovulation). You are therefore way too early to do a pregnancy test.

14. Do a pregnancy test. Reassure yourself that the inevitable negative result is only because you tested too early.

15. Decide to take your mind off things by booking a holiday or going clothes shopping. These activities also have the double effect of making you pregnant, because Sods Law is more effective than sex.

16. Take the fact that the cat sits on your lap as a sign that you are definitely pregnant.

17. Take the fact that the cat runs away from you as a sign that you are definitely pregnant.

18. See someone else’s baby/bump, cry and decide that you are never, ever going to be able to have children. Ever, ever.

19. Decide to take another test on 10 dpo. Spend at least 10 minutes holding it up to the light to see if you can see a trace of a line.

20. Pop back to the bathroom, fish the test out of the bin and check it again through out the course of the evening, see an evaporation line. Panic. Do another test. Be relieved that it’s still negative, because actually getting pregnant would scare the sh*t out of you. Repeat steps 19-20 for the next 3 days.

21. Notice some light spotting. Wonder if it could be the fabled implantation bleeding. Become convinced that it isn’t. Test again.

22. Get full period. Become convinced that it definitely is implantation bleeding.

23. Spend 24 hours in despair. Drink (because it doesn’t matter now anyway).

24. Get a hang over. Become convinced it’s morning sickness. Immediately regret that drink.

25. Get signs of new cycle, new ovulation, new hope. Have sex. Return to step one.