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:

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:

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:, 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.

Am I Pregnant? An Obsessive’s Guide

Fed up of symptom spotting? Here’s a guide for the ladies who’ve googled it all.

1. Check your calendar, even though you are absolutely 100% certain beyond all doubt where you are in your cycle. If using the one on your phone or any other touch screen device, curse every time your hovering finger touches the screen and opens up a particular date because this makes you lose count. Vow to print off a paper calendar that you can circle and annotate with a red pen.

2. Get paranoid that a friend or family member will find your annotated fertility calendar and hide it in the wardrobe.

3. Unable to make sense of your annotations, switch to a fertility app. Find that it contains old data from a pre miscarriage cycle, which skews this cycle’s data.

4. Consider deleting the old data. Feel very guilty because it’s like deleting the memory of your baby, in your crazy head.

5. Get a grip and delete old data. Find that there is not enough historic data in the app to give you any useful clues about current fertility status.

6. Give up on app and decide to go with gut feeling.

7. Realise you have absolutely no confidence in your gut feelings.

8. Google ‘Early Pregnancy Symptoms’. Find you have hardly any of them. Google ‘Very Early Pregnancy Symptoms’.

9. Wonder whether last week’s hang over was morning sickness.

10. Concentrate on boobs to assess whether they hurt or not. Run up and down a few flights of stairs. Jiggle a bit and poke them when no-one is looking.

11. Become convinced that you are pregnant because your boobs hurt.

12. Review the week when you think you ovulated in forensic detail in your mind. Convince yourself that you a) must be and b) cannot possibly be pregnant.

13. Determine that you are 8 dpo (days post ovulation). You are therefore way too early to do a pregnancy test.

14. Do a pregnancy test. Reassure yourself that the inevitable negative result is only because you tested too early.

15. Decide to take your mind off things by booking a holiday or going clothes shopping. These activities also have the double effect of making you pregnant, because Sods Law is more effective than sex.

16. Take the fact that the cat sits on your lap as a sign that you are definitely pregnant.

17. Take the fact that the cat runs away from you as a sign that you are definitely pregnant.

18. See someone else’s baby/bump, cry and decide that you are never, ever going to be able to have children. Ever, ever.

19. Decide to take another test on 10 dpo. Spend at least 10 minutes holding it up to the light to see if you can see a trace of a line.

20. Pop back to the bathroom, fish the test out of the bin and check it again through out the course of the evening, see an evaporation line. Panic. Do another test. Be relieved that it’s still negative, because actually getting pregnant would scare the sh*t out of you. Repeat steps 19-20 for the next 3 days.

21. Notice some light spotting. Wonder if it could be the fabled implantation bleeding. Become convinced that it isn’t. Test again.

22. Get full period. Become convinced that it definitely is implantation bleeding.

23. Spend 24 hours in despair. Drink (because it doesn’t matter now anyway).

24. Get a hang over. Become convinced it’s morning sickness. Immediately regret that drink.

25. Get signs of new cycle, new ovulation, new hope. Have sex. Return to step one.

Did Not Finish

On Saturday afternoon I got  a DNF. Did Not Finish. I was participating in a long distance sea swim off the Dorset coast. It was supposed to be 2.5km; I managed 1.25km. It was choppy, I swallowed a significant volume of sea water. My nose clip kept falling off. Rolling in the waves, I felt I was making no forward progress. The motion and the saline intake were making me feel nauseous. It was all I could do to stop myself being swept backwards with the current. I was not having a good time.

After an exhausting 47 minutes, as I approached the start/finish area, I made the decision to go in, rather than attempt a second lap of the course. Disappointed? Yes. Right decision? Certainly. Better that than get in to difficulty and need to be fished out by the rescue boat. Other swimmers agreed that the conditions were tough, but, other than myself and two others, everyone completed the event. Many even did 3 laps.

I’m not sure whether it was my body or my mind that made me end my race early. Certainly it was very hard work, but one’s body will only do what your mind tells it. Maybe I could have struggled on, if only I had had the determination. I’ll admit, seeing the letters DNF on the results table was gutting. Its easy to have hindsight about how I could have done more; better, but I do think I did the right thing at the time.

DNF is a strange way of describing what happens when things don’t quite work out. In actual fact, I did finish. I finished half way through; I finished early. Had I genuinely not finished I would, presumably, still be out there. Would ‘Did Not Succeed’ be any better? Probably not.

At the risk of sounding like a 1990s motivational poster, maybe I need to remember that it’s not about the starting or the finishing. It’s about the (wait for it…. ) journey. Sometimes this fertility journey that we’re on feels a bit like that sea swim. Never moving forward in any tangible sense. The perception that other people are finding it so much easier than us to ‘finish’. Struggling against the tide. Wanting to get out, but knowing that the decision to stop and sit on the shore means admitting that it’s over, at least for the time being. You could tell yourself to keep going, and eventually need to be dragged out, or you could make a decision to stop.

My three pregnancies have been DNFs. These days, its more of a case of not starting. Treading water. But not quite ready to get out. Yet.

What would you do?

I know that I live in a glass house. Therefore, I probably shouldn’t throw any stones. However, sometimes we read of and hear about things in the world that don’t lie well in our moral landscape. We’d like to think that we wouldn’t have done this, or we would have done that, had the choice been ours to make.

I’m not talking, here, about the terrible conflicts that we see going on everyday (I would need a different blog to adequately write about that). Rather, the ‘luxury’ of the lifestyle choice that we are lucky enough to have, and the great moral responsibility that this necessarily affords us. I say necessarily, because, as Spiderman famously said, ‘with great power, comes great responsibility’. Modern technology, in particular, ultrasound screening and neonatal testing gives us great power, because it gives us knowledge. It also gives us great responsibility, because we then need to act on that knowledge. Those actions are usually considered moral in nature, and therefore, we judge them to be good or bad, right or wrong. The scanning isn’t bad, the knowledge, although possibly unwelcome isn’t ‘bad’, but, in the absence of a universally agreed absolute moral framework, the choices people make are the subject of moral judgement.

I am referring, of course, to the case of the Australian couple who have taken the twin, but not the Downs syndrome sibling from the surrogate Thai mother, which has been in the news this week. Australian couple abandon surrogate Down’s Syndrome baby (BBC 2.8.14)

I have had so many ERPCs over the years to remove my deceased babies, and I remember sobbing over the ‘phone to my Dad on the eve of the first one that I didn’t know how someone could go into that operating room knowing that their baby was still alive and go through with a termination. And that was true. At that moment in time, I really could not have understood it, I was deep in shock and grief. Why would anyone do this voluntarily? That is not to say that I did not intellectually understand that some women (and girls) find them selves in terrible situations and feel that there is no other realistic option. But at that moment, I could not have empathised with it.

However, since then I’ve lost a daughter to Turner Syndrome, which kills 97% of girls who have it (it’s a missing chromosome) but 3% do survive and can live up to about 3 years of age (I think the oldest might have lived to 8). It really got me thinking about what I would (could) do if I knew that the baby had a life limiting condition. I don’t consider Downs to be necessarily life limiting, I mean the kind of condition that leads to a painful death shortly after birth, like Anencephaly (where the brain or skull are seriously malformed or absent), or when another organ or body part is missing or seriously malformed (like the liver or diaphragm, which I have heard of happening). I really don’t know what I would do, in that case. In a way, I was ‘lucky’ that my Turner baby died and I didn’t have to make that choice, but I can’t pass judgement on those who would terminate for those kinds of reasons.

Some also consider their existing children who they don’t want to make ‘carers’ for the long term (although aren’t we all carers in families at some point, so I have slightly less sympathy with that position). I have not walked a mile in their shoes. The instinct to protect your living children, the ones that are already hare, for whom you have such hopes, and in whom you see such amazing potential, is a powerful one.

The problem is that there is a slippery slope, and once you allow/permit some terminations, it can be seen as more difficult to draw the line. And no-one would want all the problems that go with back-street abortions etc.

Is scanning per se a good thing, since it gives us this kind of information on which to make these kinds of decisions? Female abortion (and abandonment and infanticide) are big problems in India and China because of the ability to scan the unborn. More and more ‘defects’ can be picked up on scans and tests, and there is an argument that, if you can prevent people from being born with these problems, you are doing them a favour. But if this is used to justify terminations for cosmetic or ‘non-life limiting’ conditions, or even gender, have we abused the technology? If so, ought it be used at all? So, ‘Boo’ to scans!

Conversely, we are the recipients of reassurance scans, which Prof Lesley Regan (St Mary’s RMC clinic) and others do say helps with preventing miscarriage, because TLC of RMC sufferers does seem to have a positive impact, anecdotally, at least. So, ‘Yay’ to scans!

Some Christians (and I am sure other faiths and Humanists, and atheists – should have just said people…) such as Joanna Jepson argue that, if we select for perfection in the womb, we are sending a message to the living disabled that they are ‘worth less’ than ‘normal’ people. (I hesitate to use the word ‘normal’, as, really, who is ‘normal’ anyway?)

The fact remains that people make choices based on their personal circumstances at the time. Sometimes they are selfish, and sometimes they are frightened and oftentimes they are wrong in our eyes. Most people decide with their hearts, not their heads, anyway, so are they really making rational moral choices? (Philosophical can open, ethical worms everywhere.) But I can only look after my own moral choices, and, since I can’t say what I would do in any given situation, it is hard for me to condemn others.

I would agree, however, that, on the face of it, this Australian couple appear to have made a selfish choice, which I would like to hope that I would not have made. The question is, is it always morally wrong to be selfish? I can’t answer that.

No stones, then. Maybe just some handfuls of sand to draw attention to the debate, and leave them, and their consciences, to it.