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

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.

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.