Telling people

Written 20th December, 2014.

We’ve finally reached the part of this journey where society says we can let people know what’s going on. Thanks for the green light, world! On Tuesday we had our 12 week scan, and baby is literally alive and kicking (fidgeting, he says). It’s growing fast, too, and we’re now 12.6 when we thought we were 12.4 (which was advanced from being 11.4 when we thought we were 11.1). The NT measurement is 1.4 and, whilst we still await the blood test results, we are beginning to consider starting to think about possibly relaxing. A little bit. Maybe. PHEW! I have a photo, but I won’t post it here. I’m still in such a state that I find it hard to see other people’s photos, and given my ‘readership’, I just don’t think it’s appropriate to post such an image here. We’ve even booked a 20 week scan, which seems extraordinarily confident. I’ve been asked what we call it. No pet names just yet. We call it “assuming all is…”, “if everything…”. We’ll have to do better than that, but not until we’re ready.

There are lots of reasons why I really disagree with this socially mandated tradition of waiting to 12 weeks before telling people you’re pregnant. It’s a way avoiding embarrassing conversations in which you have to ‘un-tell’ people you’re pregnant because your baby has died (miscarriage makes people so uncomfortable – poor them), but I do understand that these are horrible conversations, and women may genuinely want to grieve in private. But, and this is my main objection, the people who are affected my miscarriage are grieving. This is a legitimate human emotional process and it does people damage to bury it. Grieving means that sometimes people experiencing it get emotional angry and withdrawn (and a whole range of other perfectly normal grief responses), and they need support and understanding They don’t need socially imposed secrecy and shame. This, if they’re keeping the pregnancy and then miscarriage a secret, is support they don’t always get. I think this a cruel and wrong. I’ve been lucky to have so many wonderful friends and family around me to give support, but I know lots of women who have kept everything secret and suffered alone. And this says nothing of the partners who’s emotional needs are often even more neglected. Still, at least no-one’s made a social faux pas.

That said, people do say some really weird things to women who have miscarried and some of those are down right offensive (it wasn’t really a baby yet etc.). On balance, however, I think that this is a consequence of people not really knowing what to say. Maybe if everyone was more open, people would get better at not putting their foot in it. So I stand by my original point.

I want to write, however, about another delicate problem, the weight of which I feel very acutely, and to which I don’t really have a solution. This is the problem of telling people who will be upset by the news. Having been on this road for over 3 years, I know lots of people who are in similar situations. I know (because I’ve been there – and if you follow my blog, you’ll have seen the messy outpourings of grief that follow other people’s pregnancy announcements) how devastating Other People’s News can be. It’s not selfishness, it’s self preservation mixed with varying degrees of Post Traumatic Shock and (guess what?!) stifled grief (from all of that not-telling you did to stop people from being uncomfortable when you had your miscarriage). That’s really damaging, and it makes me feel really sad that friends of mine are going though it. It makes me even sadder that, now, I am the cause of this kind of upset to these friends. I’m sorry.

I want to show these friends of mine that I have enough respect for them that I don’t announce in public places where they can’t get away from a social situation, but it also feels like such a breach of trust to call or email someone and bring such upset and anguish into their home, their safe space. It’s such an intrusion. Even writing these blogs caused me to really think about who might see and be upset by them. All I can really say is that I am sorry, and I do get it. I used to feel the same. I hope it will happen for them soon, too.

Risk

Written 13th December, 2014.

Last Tuesday we had what Professor Brosens described as a ‘highly reassuring’ scan. We are now over 11.4 weeks and the baby was leaping and dancing about, kicking and hiccoughing. As I commented to the consultant who scanned me, we’ve never seen one that big before. Every good scan means that it is just a little bit more likely to happen this time. The odds are, as you might say, increasingly are in our favour. But can we relax? Of course not.

Next Tuesday afternoon is The Scan. The Big One. 12 weeks. And we’ve been there before, and it was not a happy experience. Although we’re beginning to turn our minds to the possibility of there being a chicken, we’re still not quite ready to actually count it.

The 12 week scan comes with tests (http://www.nhs.uk/conditions/pregnancy-and-baby/pages/screening-amniocentesis-downs-syndrome.aspx#close) which we both (think we) want (great if the results are good) and don’t want (what if they’re bad?). The consultant gave us a bit of a talking to to ensure the implications of getting those test results. We have been through so much already. Have we considered what the possibility of high risk results might mean for us? She hastily assured us that she had not noticed anything on the scan that made her mention it, in particular, but that she felt that too many people have the standard tests without really thinking carefully about the implications of the results. The first thing to do is to realise that risk is not diagnosis. Lots of people, apparently, don’t understand the difference. So a risk of 1:150 is considered ‘high’, but, of that, it means that 1 baby in 150 with those results would have a condition such as Down’s Syndrome. 149 babies would be fine. It’s still pretty scary, though. We’ve been through so much to get to this point. Would we make a choice to end it? No. I don’t believe that I would even consent to further invasive tests like amniocentesis because of the 1% risk of miscarriage. But I think that knowledge is better than no knowledge, so we plan to go ahead with the screenig next week.

The odds are in our favour (mostly – they were more in our favour three years ago when we set out on this journey, but what can you do about time?). How much more can we take? Could we ever do it again, even if it works out? We always thought we’d have more than one child, but it’s been such a a struggle to get to this point, and I’m not getting any younger, and the risks will only increase.

And I know too many stories. My own sad ones, and the sad heartbreak of other women whom have been kind enough to support me on this journey. You think what I’ve been through is bad? I know stories of recurrent miscarriage that break my heart and chill my blood. No-one can keep their innocence about pregnancy after this.

At the end of The Lord of the Rings: Return of the King (the film, sorry, not got my literary hat on this morning!), Frodo says: “How do you pick up the threads of an old life? How do you go on, when in your heart you begin to understand there is no going back? There are some things time cannot mend. Some hurts that go too deep that have taken hold.” We did go back and are in the midst of having another go, but how many times can anyone do this? What has happened to us will stay with us forever. It has made us, in a really fundamental way, different than we would otherwise have been. What’s the cost? ££££ on counselling and cognitive hypnotherapy to try to repair the damage done by post traumatic medical shock. I still can’t look at other people’s 12 week scans on facebook. I think I could be The Old Woman Who Lived In A Shoe, with so many children I didn’t know what to do, and a babybomb scan photo would still turn my blood to ice. This is a terrible learned behavour. I feel sad that I seem to be stuck with it.

What else can I say? Wish us all luck for Tuesday.

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.

Blood bath ***Caution. Contains graphic descriptions***

There is little more alarming that a spot of blood when you go to the loo, if you’re pregnant. Everybody knows that your periods are supposed to stop, and, although we probably all know someone who has had break through bleeding or spotting early on in their pregnancy, it doesn’t make it any less scary if it happens to you.

The start of my first pregnancy was characterised by several episodes of light spotting. This, although never accompanied by pain (which is the scariest sign of all), was worrying enough to result in two separate ambulance rides (once from work, once between hospitals), a day in a bed on Ward 4, several hours in A&E, three trips to the EPU (Early Pregnancy Unit) and more than one out of hours doctor’s appointment. Hysteria will get you a long way.

My second pregnancy was just as short as the first, but much less bleedy, lulling us both into a false sense of security that the outcome might be better. It wasn’t. So much for that theory.

But, for all of these minor episodes of spotting, nothing could have prepared me for what happened at the start of my third pregnancy. We had gone out for the evening and were in a local pub with friends. I was driving, so no need to fib about why I was off the sauce. I was faithfully taking my cyclogest (progesterone), and was (thankfully) wearing a pad, since that can be a rather ikky, messy business. Suddenly I felt what can only be described as a ‘gushing’ sensation. I excused myself and, upon reaching the ladies room, found that I was covered in bright red, fresh blood from the waist down. I cleaned myself up as best I could and asked a passing friend to fetch my husband. I felt strangely calm and detached. Oh well, here we go again. That’s that, then.

We stood staring down a toilet that looked like it had just played a starring role in a slashser movie, wondering whether to flush. We thought that our baby might be in there, somewhere, but there was just too much blood everywhere to tell. I knew that one of the best chances we had of finding out a cause would be to recover it and have it sent away for genetic testing, but, in the end, neither of us could do it. So we flushed.

If you have suffered a serious bleed during pregnancy, and miscarriage seems immanent, you are advised not to drive (in case you faint). My husband had already had a beer or two and I was the designated driver, but now I couldn’t safely drive, either. A friend kindly drove us the 20 minutes to the nearest A&E and dropped us off.

We waited.

And waited.

And waited.

9, 10, 11 o’clock, 12 o’clock rock.

Having arrived at 21:00, we were seen by the triage nurse maybe an hour later, and I was cannulated. My theory is that they do this so that you can’t escape if you get fed up of waiting the further three hours after you’ve been triaged. Targets met; everyone’s a winner! It was almost 2 am before we were seen by a Doctor, 4 by the time we were discharged.

The whole time we were there (sustaining ourselves on chocolate and fizzy drinks from the healthy choices vending machine, having ascertained that I didn’t need to be nil by mouth), at no point were we offered a scan. We were given an appointment at the EPU three days later. Point 2 of the Mumsnet Miscarriage Care Campaign (http://www.mumsnet.com/campaigns/5-things-that-need-to-change-in-miscarriage-care) states that scanning should be available. The reality is that if you present at A&E with bleeding in early pregnancy, there is a good chance you will be waiting several days to find out whether your baby is alive or dead. It is my strong belief that this fact puts appalling mental strain on women and their partners in a, frankly, oppressive ’12 weeks of silence’ (or is that isolation?) culture. More steam to vent on that one another time!

We got home at about 4:30 am, I emailed work to let them know I wouldn’t be in (and set my cover lessons! How’s that for dedication!), and we went to bed. No alarm clocks. We would deal with the morning in the morning.

Tuesday was spent watching day time TV and eating fish and chips. There was a program about cats on. It was nice. Invariably, when we’ve had pregnancy related issues, it’s felt like all that’s on TV is One Born Every Minute, or a character in a favourite show is getting a scan (Bones, Breaking Bad, Homeland, all had story lines featuring scans right after I’d MC’d). The scan was booked for Thursday. We decided to be proactive so we got up and went down to UCLH’s walk in EPU first thing on Wednesday morning and waited.

There, against all odds, we saw a tiny little flicker of a perfect heart beat; 6 weeks, 5 days.

I believe that we experienced the full range of emotions over the course of those three days. It’s not a roller coaster ride I’d care to repeat.

And I know it didn’t, ultimately, end well for baby number 3. But it wasn’t anything to do with what happened that night. In fact, we were told that the combination of progesterone and aspirin can lead to these kinds of sudden, heavy bleeds. As far as this part of the story goes, it may not have been a happy ending, but I’ll take a happy middling. It’s a close as we’ve got, so far.

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The Facebook baby bomb

Social media is fun, right? Are you having fun yet?

I like Facebook. A lot. It’s fun to share status updates about what your dinner looks like, your cat in a box, and so on. We love it.

But sometimes Facebook can ruin your day. I’m taking, of course, about the MC-er’s dark nemesis: The 12 week scan photo. It catches you unawares; it won’t go away, no matter how many times you click ‘I don’t want to see this’ (go on, ask me why…). Even if you do get rid of it from you news feed (normally by un-following or de-friending the person concerned), it comes back again as friends ‘like’ and comment on it.

ARE YOU HAVING FUN YET?????

Of course, I’m not saying that people can’t share good news. Social media is a fantastic way to keep in touch with people in a weird active/passive way where you let the congratulations come to you. And it’s lovely to feel warm and loved. In fact, some of the biggest outpourings of love and support I have had have come from the Social Network. It’s the picture I can do with out.

Maybe it’s because I’ve never seen a baby shaped baby on a scan (MMC 3 had a discernible  head and arms at the 9.1 wk scan, and I swear I saw those arms wiggle. Although it might have been wind/hysteria). Maybe it’s because I’ve seen more ‘bad news’ scans than good, and I’m slightly traumatised by those grey, grainy images. Maybe I’ve just turned into a jealous old cow.

Whatever. The Facebook scan photo baby bomb turns a nice day into a bad day, and it comes right into your personal space without warning.

This excellent blog entry sums up very well what the FB baby bomb can do to a (mostly) sane woman: http://thingspeoplesaidaftermymiscarriage.blogspot.co.uk/2011/10/complete-guide-to-facebook-post.html

And I’ll tell you what, Facebook. I’ll stop posting pictures of the cat when you stop baby bombing me. Do we have a deal?

WELL, DO WE?

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