Planning for emergencies

Why it keeps happening is unexplained, but it does seem that we can expect it to keep happening.

After week of normality, I experienced another big bleed on Thursday night, in the middle of the night. I had been out for a lovely evening with friends and my husband had been in to London to see a band. He was home, I got up for a glass of water at about 01:30 am. We had a brief chat about what nice evenings we’d both had, and then, whoosh, I was covered in blood again.

We knew what we were supposed to do. I phoned the labour ward and explained the situation. They told us to come in. Since the bleed seemed to have stopped and there had been and was no pain whatsoever, I drove. Whilst my husband wasn’t drunk, he had had a couple of drinks during the evening, so driving would have been unwise. I specifically asked the duty midwife whether it would be OK for me to drive – had the advice been ‘no’, we would have taken a taxi.  I hasten to add that, at 28 weeks, I really don’t think its unreasonable to carry on with some kind of normality. However, under the circumstances of constant uncertainty, we have now reviewed this high risk ‘going out’ policy.

On the way to the hospital we saw an owl, which was pretty cool. But we were rather too preoccupied to really enjoy our Springwatch moment.

Upon arrival we were shown into the maternity triage area and I was treated to the usual procedures of monitoring, blood tests, cannulation, internal exam, showing people the contents of my underwear etc. This time we even got a scan. Was I in pain? No, except for the needles and intimate examinations. This, once again, didn’t seem to be the onset of early labour. Whilst we were being seen, another lady was brought in who was in labour. I think that this was the first time that my husband had ever heard someone in pain like that before (i.e. in real life, not how its portrayed on the telly). I think he found it really rather alarming.

By about 5, it had been agreed that rest and monitoring were the way to go, However, the labour ward was full, so we were put in a delivery suite for the remainder of the night. I had the bed, my husband had a beanbag on the floor. He commented that the beanbag was somewhat lacking in beans. We put this down to NHS cuts. (Bloody Tories!) I was also given an(other) anti-D injection due to my Rhesus -ive status. Apparently you can’t overdose someone on this, so I can expect another jab every time I’m in, as well as the routine one I’m getting next week from my midwife.

We got a couple of hours’ sleep and then were transferred to the Observation ward. This was a private room, which was nice. More monitoring, and baby continues to do well as far as heartbeat and movement are concerned. I was not being fed, which is of some concern, because that means that someone, somewhere thinks that surgery could still be on the table (so to speak). My husband went in search of food (he brought me back a croissant, but I had to wait to get permission to eat it). As we awaited the doctor’s rounds, we realised that we could overhear the phone calls being made at the desk just outside my room. The patient under discussion was me, and there seemed to be some degree of disbelief over the position of my placenta. The doctor doesn’t believe that my placenta praevia could have resolved so much between 20 and 27 weeks. This is consistent with what we were originally told; it might move, but it has a long way to go, so we shouldn’t hold out much hope of that happening. But, according to the scan last week, move it has. She’s not convinced and another scan is required. I am sent, by wheelchair, to radiography. It’s weird being wheeled around. i feel like a bit of a fraud, but I don’t have a choice.

The scan confirmed that the placenta has moved, and that everything is looking good. There was still no obvious bleed site, so, really we’re no further forward, except for confirming something that today’s consultant thought was unlikely, but which was, in fact, true.

After this, I was allowed to eat, and the staff on the observation ward arranged for me to be sent upstairs to the slightly less observationy communal ward. They just needed to check that the bleeding had stopped. I was happy to comply, and sat up, and Gush. The clock started again. I’m not going anywhere for 24 hours. On the plus side, I got to stay in the private room, which is good because I’ve just bled all over it.

Fortunately, the rest of that evening and night passed without further incident, although I did manage to get a couple of hours ‘off cannula’ in the evening. I got a new one before going to sleep, though. No-one wants to have to put in a new one in a midnight emergency. I was told by the evening doctor that no-one knows what keeps causing the bleeding, but that they’re going to treat it as if it is the placenta. Better safe than sorry. It’s a balancing act; as long as the baby is fine, they’ll leave it in as its far better off where it is. However, if the baby starts to become distressed, or growth doesn’t carry on as normal, it could mean that the placenta is failing, and then they’d take the baby out as, at that point, it would be better off in an incubator. Hopefully those things won’t happen, though.

Another morning, another doctor. The same ‘we don’t know so we’re going to be cautious’ message. It was the same doctor that we saw on Tuesday. No, it looks like I can’t keep away, lol. Actually, I do keep running into medical staff when I’m out and about (by which I mean walking between my bed and the toilet), and they greet me like old friends. I’ve been here too long.

So, my current instructions are to take it very seriously, keep as active as I can but don’t go too far from the hospital. I can go back to work (assuming that work will have me) as long as I come straight back to hospital if there is any further pain or blood or anything else that might cause concern. As long as my and the baby’s obs are good on the evening rounds, I will be free.

I spent the rest of the afternoon upstairs on the regular ward. The food, which has been good up until now, was rather hit and miss on Saturday and I got an egg salad sandwich in place of the ordered macaroni cheese, but I was hungry, so I ate it. Dinner took its sweet time, too, and by the time it arrived, I was laying flat so that they could listen to the baby’s heartbeat on the monitor. My husband had to spoon feed it to me in bit size chunks. As if this wasn’t a strange enough experience, at the same time the lady in the next bay, separated from me by a curtain went in to labour very quickly after her baby kicked her hard enough in the cervix to break her waters (she was overdue, so they were probably ready to go). Less than metre away, my husband was leaning over all the machines trying not to get ketchup on everything whilst this poor woman was begging for an epidural. It wasn’t funny really, but it was such an odd situation, that, whilst we and I were trying to be quiet and discrete, we were failing because we kept getting the giggles. You couldn’t make it up, but there is a comedy sketch in there somewhere.

I’m back home now, enjoying the comforts that that entails, hoping we don’t have to return to hospital anytime soon.

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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.

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.

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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