I need instructions for normal

We had our consultant appointment yesterday, and we have the all clear to carry on as normal. No bed rest or even house arrest, because apparently all this lying around might lead to blood clots in my legs and the risk of that is now greater than the risk of bringing on any further bleeds or, indeed, labour. On the subject of labour, given the shortened cervix, at 28 weeks we have been advised that the baby is pretty much ‘done’, if small, and, because it’s had the course of steroids, it would have a very good chance if it were to arrive early. It would have to go in an incubator, but it would be considered a better option to let nature take its course rather than try to delay things. The only reason that they would give treatment to delay things is if they needed to move me to a different hospital where there were available incubators.

BUT, all of this is ‘worst case scenario’, because there is every chance that I will carry this baby to term and have a totally normal, emergency free delivery at some point in June. This really is something to get my head around as we had had it in mind for the last 2 months that we would have a planned C-section at the end of May. I have not done any of the mental preparations that the books have been going on about, because I didn’t think it would apply to me. Being something of a control freak, I was quite comforted by the idea that we would go in to hospital at 36 weeks and come out a few days later with a bundle of joy. Job done. Not so straight forward anymore, but normal is good.

The consultant encourages me to take gentle exercise and go swimming, and to take regular stops to stretch my legs in long car journeys. My waking life is now to be treated as if I am on board a long-haul flight; support stockings are on my mind, if not yet on my legs.

My blood pressure was taken (still fine, at the low end), the bump was measured (ahead a little, but I expect that’s down to the growth promoting steroids), and the baby’s heart beat was listened to. We’re keeping the appointments at the end of April ‘just to be extra sure that things are still looking normal’, and we remain on the kind of alert that is normal for women in their third trimester (amazing to think we’ve made it this far!).

Back at home, and in the absence of anything proper to worry about, I decided to read my notes for the day. I was alarmed to see that, under the heading of ‘Hb’ the number 106 had been written. Heart beat of 106? Whose? Not mine! Mine is closer to 80bpm. The baby’s? Should be 140. It was 140 last week! What’s going on?! To add to the confusion, the 106 was written in a different hand writing and a different pen to the rest of the notes from yesterday. Underneath this, in yet more different handwriting, it says ‘x low hb’. This is even more alarming. My husband, upon studying the notes more carefully, notices that the box for ‘fetal heart’ is ticked, indicating that it was heard but not measured today. Looking back, it is this box, not ‘Hb’ where the numbers are usually written. I am reassured that we would still be in hospital if there were any real concerns. After all, they were very cautious with us last week, why suddenly become reckless now? It’s much more likely that I simply don’t understand the notes, he advises. I agree, and bow to my husband’s logic in this matter. Then I secretly google ‘decoding antenatal notes’ and discover that the code ‘Hb’ stands for IRON!!! Not heart beat. What an idiot! (To be fair, heart beat does seem reasonable… maybe I’m not supposed to understand the code?). I have low iron. I mentally note to eat some leafy dark green vegetables tomorrow.

With that panic firmly put to rest, I relax into my new status of ‘normal’ and look forward to remaining ‘normal’ for the next couple of months, at least. Then I awake at 4 am and, realising that I am now 28 weeks and am supposed to no ‘count the kicks’. Unable to get back to sleep, I start counting. I get 10 in 20 mins (apparently you should worry if you don’t feel 10 within 2 hours). More normal, more reassurance. I go back to sleep and have a very vivid dream about blood transfusions…. I think this might be my normal life, now… ūüôā

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…

The difficult demographic

In the very small bits of time when I’m not feeling sorry for myself, I feel sorry for the medical practitioners that come in to contact with women like me. Recurrent miscarriers; professional, educated late 30 something women. We are used to Getting Stuff Done. We’re clever, organised and our memories are long. And thanks to the Internet, we can research, read and gain at least a basic understanding of journal papers and read peer reviewed, published research. This ought to make us more difficult to fob off, but somehow this seems not to be the case. What is happening instead is that these kinds of character traits are making it easier to piss us off when we get fobbed off.

Don’t get me wrong, we know we’re the subjects of a very little understood area of medicine. RMC, after all, has been seriously underfunded for a long time. This is the case,¬†in my view, because¬†it happens to women and you don’t die from it. But there is current, peer reviewed research going on, and its high time that all of the major centres of excellence got on the collaborative bus, put their egos away and started moving forward.

Trying a new procedure at a new clinic (after reading their research) is not the same as going down to the health food shop and loading up your basket with as many supplements as you can carry, because you read on line that they worked for someone’s sister’s cousin. But some top consultants think it is the same.

I’ve been told IVF won’t help me, and I understand my medical issues sufficiently to accept this and not spend my money going privately for that¬†treatment. I have also¬†read several published medical papers on NK cells and new research on the dynamic process of implantation, and I don’t think it’s b*llsh*t. So I’ve made informed choices about what I need and what is worth paying for. Yes, I have also heard anecdotal stories of success, too. But I’m not just getting recommendations on buying a fridge, so, although they’re helpful, I’ve looked at research with medical authority, too. I’m not a fool.

The Philosopher R.M. Hare, in response to the question of¬†whether unfalsifiable beliefs were meaningful and rationally held posits the theory of Bliks. In this theory, he gives the example of a student at university who thinks that all of the¬†professors are trying to kill him. Nothing will shake his belief in this. Even when the professors are kindly towards him, he thinks to himself, “Aha! They are trying to ¬†lull me in to a false sense of security before they strike!” This¬†Blik¬†is clearly insane, especially because no amount of evidence will persuade him to consider changing his view.

I am concerned that there are a few Bliks mixed in with the egos at some RMC clinics. And who suffers? Women and their partners who are looking for help and answers. We’re intelligent enough to know the difference between medicine and ‘snake oil’. Treating us as if we’re not is extremely frustrating, and I’m sure that everyone in the RMC world, on both sides of the speculum would agree that feeling wound up isn’t (literally) going to get us anywhere.

A little collaboration would go a long way. Bury the rivalry, please.

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.

Testing Testing, 1,2,3…

In the UK, on the NHS, you are not considered to have a ‘problem’ with miscarriage until you have had three of them. In a row. If you have a THB (Take Home Baby) in amongst your MCs, the clock is reset. “Bad luck” is what they put it down to. And its not difficult to see why that is. The statistics tell us that MC is very common at least 20%, probably 25% of confirmed pregnancies will end in MC. And that’s just the ones ‘on the record’. I bet that if you asked 5 women of childbearing age about MC, you’d get a few stories back. That couple with that big age gap between their kids? I know what I’m betting on.

The advent of very sensitive HPTs (Home Pregnancy Tests) means that we know earlier and earlier when conception has occurred, and it all adds up. What might have been a slightly late and heavier than normal period 20 years ago is a very early MC now.

But that’s not the point. The real point is that it is a matter of fact that this happens to A LOT of couples, once, or maybe twice, and the very vast majority of those couples will go on to have subsequent healthy babies with no medical intervention (although it will, of course have been emotionally and mentally difficult for them, naturally). And, as a result of this fact, it is not financially ‘worth while’ (for want of a better phrase) to test every couple before they’ve got to the ‘magic 3’ unless there is a good reason, such as a known heritable genetic condition, or some other complication.

With respect to testing, I was lucky. Possibly because of having attracted the attention of a few Consultants, I was now ‘an interesting case’. I also have excellent GPs who were able to order the ‘cheaper’ bloods after MC 2 (clotting, some auto-immune etc.) and put us on a waiting list to talk to someone at our local hospital’s miscarriage clinic. The tests all came back ‘normal’. In fact, they would usually do them twice, but they were so normal, they left it at one round (presumably to keep the costs down, after all, I was not really officially entitled to them at that stage).

Having physically recovered from ‘Retained Products Gate’, off we duly went to our appointment. On the day, we were seen by the locum. What she told us would stop us in our tracks:

“IF YOU WANT TO HAVE A BABY, YOU WILL NEED TO HAVE SEX 3 TIMES A WEEK.” Well, f*uck me if it isn’t the Sherlock Holmes of fertility!

After that crashing disappointment, we eagerly awaited our next appointment a couple of months later. This time we were seen by a much more sensible Doctor who gave us lots of advice (stop being vegetarian – might help, might not, but at least you’ll have tried), a prescription for next time (baby Aspirin and progesterone pessaries), and a funny story about her cat (she had taught it to use and flush the toilet). We felt much more positive after that consultation. More importantly, we could put in to action two out of the three things she had said (I’m still working on that cat/toilet flushing thing).

This was shortly after Machiavelli (see previous post) had been killed on the road, so I was pretty much in the depths of despair, but at least we had some kind of a plan, and that was progress. When it comes to matters that take control of your health (and therefore your life choices, to an extent) out of your hands, having a plan makes a world of difference.

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