If necessary use the emergency exit

I am happy to report that baby’s re-scan went well today. Spine and kidneys all present and correct. Baby was asleep when the scan started, but awake by the time it was over (well, so would you be if you were being prodded and poked and blasted with sound waves). Growth is on track, and he or she (we haven’t found out) seems perfect – and looks like a real baby (there is no reason for me to be surprised by this, but somehow I still am).

The less good news is that the placenta is really very low, and, although many low placentas do move up in later pregnancy, it seems that mine has quite a long way to go – 7 centimeters. We saw the consultant and he has officially given me the diagnosis of placenta praevia (http://www.nhs.uk/ipgmedia/National/Royal%20College%20of%20Obstetricians%20and%20Gynaecologists/assets/Alow-lyingplacentaafter20weeksknwonasplacentapraevia.pdf). He is already talking about a planned c-section at 36 weeks or so, which brings the EDD forward to the week of the 27th May. That’s almost a whole month! (!!!!!) I’m not too worried about that, per se, because it’s pretty much term, and they can give me injections to help accelerate the development of the lungs etc., so the baby will be able to manage. To be honest, I just want it to be OK, so I’ll take whatever advice I need to take to achieve that. I don’t think I’ll feel any ‘less of a woman’ if it ends up coming out through the sun roof. It’s not about me, it’s about getting this baby healthily into the world, whatever it takes. I’d rather avoid hospital scares along the way, but I’ll do what I need to do to achieve that objective.

We’ll be scanned again at 32 weeks to see what’s happening and I expect the final decision will be made then. Assuming, that is, that nothing untoward happens in the mean time; we are on alert to go straight to the Labour Ward if there is any spotting of any kind, where I’ll me monitored for 48 hours to check it isn’t a more serious bleed. But hopefully nothing like that will happen. (Please don’t let anything like that happen!).

Apparently, the risk factors (that could possibly affect me – given that I am not a smoker or a cocaine user, I can rule those out as possible causes!) are age (a factor at 38) and previous c-sections (no) and ERPCs (4 + 2 hysteroscopies, including the surgical removal of a septum). Has my surgical history caused this placenta to mis-grow? Even if it has, there’s nothing I can do about it now.

Wish us luck for an incident free path through the next 3-4 months, and getting baby safely into the world in either June or May. Whatever it takes.

A look inside

This week has been a week of scans.The letter that invites us to the routine 20 week anomaly scan is really quite a scary read. It lists a range of unpleasant things that could be missing or damaged with your baby, and the percentage chance of them being detected. (If they are present is what the letter doesn’t say). The wording is alarmingly ambiguous, making you wonder, on first reading, what the chances are that your baby might have all of the unfortunate conditions listed. An addition of the sentence ‘These conditions are rare, however, if present, these are the percentage chances of your sonographer being able to visually detect them’ would make it read slightly better.

My nerves for this scan had been building for some days, but the reassuring kicks helped me to think that things would probably be OK; nothing that wriggles about this much could be poorly. If this optimism sounds like the prelude to the revelation of some terribly sad news, don’t worry. It turns out there’s a little person in there, with two arms and two legs (with reassuringly average length thigh bones). Parts of the developing brain are picked out and measured; all present and correct, head looks normal, as does the face, and it all seems to be proportional, size wise. Abdomen, also fine, with stomach and bladder clearly visible. All four chambers of the heart are busily pumping away and eventually a good enough still image is taken for our records. But, for all it’s wiggling and kicking, this baby doesn’t want to turn around. I am sent to go for a wee in the hope that my moving will encourage baby to move, but it doesn’t. So, whilst we’ve seen the spine, the image wasn’t sufficiently clear to complete the scan report, and the kidneys also need a closer look, so we’re back in 2 weeks for another scan. The placenta also seems to be lying a little low, and although it will probably correct itself, we are also going to need to be re-scanned at 32 weeks just to make sure it’s moved. If it hasn’t we’ll be looking at a sun roof delivery. But that’s ages away.

The extra scan isn’t a problem; I’ll be on half term so no need to ask for more time off work (which isn’t a problem in itself; work are being great), and we were due back in to see the consultant on that day, anyway. The administrative dis-communication with appointments this week and last has been quite special. Last week I was offered an appointment at High Wycombe hospital to see the obstetrics consultant. This would have been the day before the scan, which was going to be at Stoke Mandeville. I was able to make the swap between hospitals to see a different obstetrics consultant, but for 2 weeks time, and now we have been able to organise the repeat scan for the same day as the consultant appointment, too, so it all seems to have worked out.

The other bit of me that’s needed to be scanned this week is my armpit. One of my boobs (which which are going for some sort of world record) has grown into my left armpit, and is a bit lumpy and sore. It’s been like it for years, but it’s got worse since I’ve been pregnant, so I’ve been sent along to the Wycombe breast clinic to get it checked out. The appointment I was allocated? Within 10 minutes of the scan appointment at Stoke Madeville on the same day. They were happy to change it, but I do think that some kind of patient records information system would have been useful here. The breast clinic is excellent, and I was scanned, seen and reassured in one afternoon. They were running late, and I was there for a few hours, but it was OK. Better that than some other kind of bad news.

So, happy mummy, happy (stubborn) baby. And we get two bonus sneak peeks. Meanwhile, I’m still getting kicked, and, since most of the kicks are on the left hand side, I’m guessing baby is still pretty comfortable where he or she is.

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.

Practical Matters – What Happens at St Mary’s and Coventry RMC Clinics?

This post is intended to help ladies (and their partners) get an idea of what to expect if you have been referred for testing at these hospitals. I’m writing for those who have miscarried for a third (or more) time, as you are now officially sufferers of Recurrent Miscarriage, or Repeated Pregnancy Loss. You are probably in a state of grief and disbelief that you have miscarried again, at the same time as being determined to find some answers. You may have a helpful and supportive GP; you may not. Even if they are supportive, you will probably need to chase things up a bit, because although there are a lot of brilliant things about the NHS, sadly admin isn’t always one of them. See this post for more information: https://justonemoretimeagain.wordpress.com/2014/07/04/full-time-administrative-assistant-required/

These are my experience of these two hospitals. Your experiences might be slightly different, but hopefully this will be helpful to you. If you are able to do so, get your local hospital (wherever you had your last ERPC, if you had one), to send away the tissue samples from that procedure, or any tissues you have been able to recover, for genetic testing. If you take them to the hospital yourself, DO NOT allow them to be stored in formaldehyde, as this will make genetic testing impossible. This advice is from Prof Lesley Regan’s 2001 book, which you may find helpful: http://www.amazon.co.uk/Miscarriage-What-every-Woman-needs/dp/0752837575/ref=sr_1_3?s=books&ie=UTF8&qid=1409471375&sr=1-3&keywords=lesley+regan

A note on genetic testing; you may be asked to sign a parental consent form. This may be upsetting, but it is necessary, so it is good to be prepared to be asked to do so. Results from these tests take about 6 weeks and the consultant will normally phone you to tell you the results and follow it up with a letter. This information is very useful in determining what has happened in your most recent loss, and what might be able to be done to help you carry a baby successfully to term in the future. The NHS offers this kind of testing after three miscarriages, although, if there is a reason to believe that there may be a genetic issue in your or your partner’s family (many people live perfectly normally with a balanced translocation of chromosomes: http://miscarriage.about.com/od/twoormoremiscarriages/p/balancedtranslo.htm), then you might be able to get these tests earlier. Some hospitals will let you pay for these tests after 2 miscarriages, others will fob you off (I was told that they ‘didn’t have the right container’ after my second miscarriage, queue hysterical woman in backless gown – I always regretted not fighting harder for that one). You may be able to get your local services to order karyotyping for you and your partner, which will establish whether either of you have a balanced translocation that you may be passing on. Again, the results take about 6 weeks. All of this information will be very useful in determining your treatment plan for your 4th ‘try’, and your RMC clinic will want to take it in to account.

I was seen at St Mary’s last year (October 2013) and for the first appointment you will be scanned, medical history taken and lots of blood drawn. These are for clotting, thyroid and antiphospholipid antibodies.  You will need to go for a hot chocolate or something afterwards. You may wish to take your old notes and paper work copies with you if you have them, they may take some copies for your file. You may be invited to sign up for the TABLET test which is a study involving thyroid antibodies. Many of us donated a sample but were not used for the trial because we didn’t fit the criteria, but you might be, if you wanted to sign up.

If you need anything doing (hysteroscopy etc.) they’ll book that in. I had a septum removed, which was fine, like an ERPC with two coils and HRT for a month afterwards. It was a day procedure and not very painful. Things to consider for St Mary’s; they don’t allow partners on the ward, so you will be admitted and put in bed for the day and your partner sent away at 07:30 am and asked to come back at about 15:00 (they’ll call him). This is unlike other hospitals where you can wait together until it’s your turn. Take a good book. At St Mary’s, they also try to fit in as many operations as possible, which can mean that there is a long wait if someone’s procedure takes longer than expected. When I was there, someone was sent home and given a new date for surgery. This was obviously very upsetting for them. I think this is rare, however, and was caused by an earlier surgery of the day being more complicated than anticipated. It happens.

You might have a non-surgical procedure, or just the blood tests, so please don’t be worried that you’ll necessarily end up in theatre!

You’ll go back for repeat blood tests 6 weeks or so after the first lot and then have an appointment to give you all your results about a month after that. They’ll tell you what your treatment/plan will be and then you ‘go forth and multiply’ and call them when you’re pregnant again so they can do the TEG blood test again and decide whether you need anything for that, too, in a pregnant state, as it can change that result.

Many ladies have also been up for private NK (natural killer) cell testing with Profs Brosens and Quenby at Coventry. This costs £360 and you need to have had 2 periods before you go. They take a uterine biopsy and then advise what to do when trying again. Some people have told me that the biopsy doesn’t hurt. I found it quite uncomfortable both during and afterwards, but nothing that paracetamol won’t deal with. They usually recommend 200mg progesterone from CD21 to CD28, carrying on if you get pregnant, and then Heparin from ‘in uterine’ scan. If you have high NK cells, you may also be offered steroids, but other ladies will know more about that. I do know of at least two success stories from ladies who have been to this clinic.

The results of the biopsy take about 5 weeks and they will email you with the outline results and a time to call for your consultation. After that, you’ll be emailed a letter detailing your treatment plan. If the protocol doesn’t work within three months (as happened with me), they may suggest not using the progesterone until you get a positive pregnancy test.

You will need to not be pregnant for these procedures and tests, and hopefully the break from trying to conceive will help you to get your head around everything and heal emotionally.

I hope this helps some ladies (and their partners) to understand what tests they can expect at these clinics. Remember, 50% of couples never get a clear answer as to why this has happened to them. As distressing as this is (because we want answers), it’s actually good news, because it means that you have a very good chance of being successful without intervention in the future.

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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