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 Grieving means that sometimes people experiencing it get emotional angry and withdrawn (and a whole range of other perfectly normal grief responses), and they need support and understanding They don’t need socially imposed secrecy and shame.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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Full time administrative assistant required

I think the NHS is a brilliant institution. I have found, almost without exception, the staff to be kind and sympathetic. OK, so there has been the odd sonographer whose dropped a clanger of a comment (“there should be a baby there”), but, really, who really knows how to do small talk in these kinds of situations?

After my repeat ERPC (Evacuation of the Products of Conception) after my second Missed Miscarriage (MMC), I was so weak, having lost a lot of blood, that a nurse had to hold me up as I nearly passed out in the toilet. The care I have received has been of a very high standard. Not to mention the excellent selection of opiates and the fact that it’s free at the point of care. I am very happy to live in the UK, and to have access to such services.

The admin, on the other hand, is sometimes, frankly, bonkers.

Point 5 of the Mumsnet Miscarriage Code of Care (http://www.mumsnet.com/campaigns/miscarriage-code-of-care) is joined-up care. Three times I have had to text the community midwife to say that I will no longer be needing her services. Three times.

To be fair, most of my hospital notes have been sent on to my GP. UCLH (http://www.uclh.nhs.uk/ourservices/servicea-z/wh/gynae/gdtu/Pages/Home.aspx) is particularly efficient, always writing up the letter whilst you are there, giving you one copy and putting the other in the post. Most of the info from clinics at local services got to my GP, too.

Sometimes letters arrive months after the appointment has taken place (I apparently had low vitamin D in October 2013, and got my results letter in March 2014). In one spectacular admin triumph, I once received 4 identical copies of the same results letter from St Mary’s, London.

After MMC 3, I wanted to be referred to St Mary’s without delay, because I knew that there would be a wait, and I wanted to get on with it. It was not a problem to get my GP (who is excellent) to agree to refer me, but the system just couldn’t cope with a non-local referral. After several letters asking me to choose one of four local hospitals and a lot of emails and phone calls, I finally got my St Mary’s appointment. But I had to work hard to make it happen in a timely manner.

My (and Mumsnet’s) point is this: women after MC are traumatized and vulnerable. They do not need to spend weeks/months researching their options, making phone calls and chasing emails. They shouldn’t have to call local services to tell them that their baby has died, and they certainly (and I am so lucky and glad that this has not happened to me, but I know plenty of women to whom this has happened) should not have to suffer reminders about routine scans. Sometimes it seems that the NHS grinds under the weight of its own admin and procedures. Individuals are lovely, but the dots don’t join up.

What I can tell you is that, at the moment, if you want joined-up care, you’d better get ready to be your own secretary until it’s sorted. Chase every results letter, ring and confirm every appointment. Find out the names and numbers and email addresses of every consultant’s secretary. Be the squeaky wheel. You may wait a long time, otherwise.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!