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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The Facebook baby bomb

Social media is fun, right? Are you having fun yet?

I like Facebook. A lot. It’s fun to share status updates about what your dinner looks like, your cat in a box, and so on. We love it.

But sometimes Facebook can ruin your day. I’m taking, of course, about the MC-er’s dark nemesis: The 12 week scan photo. It catches you unawares; it won’t go away, no matter how many times you click ‘I don’t want to see this’ (go on, ask me why…). Even if you do get rid of it from you news feed (normally by un-following or de-friending the person concerned), it comes back again as friends ‘like’ and comment on it.

ARE YOU HAVING FUN YET?????

Of course, I’m not saying that people can’t share good news. Social media is a fantastic way to keep in touch with people in a weird active/passive way where you let the congratulations come to you. And it’s lovely to feel warm and loved. In fact, some of the biggest outpourings of love and support I have had have come from the Social Network. It’s the picture I can do with out.

Maybe it’s because I’ve never seen a baby shaped baby on a scan (MMC 3 had a discernible  head and arms at the 9.1 wk scan, and I swear I saw those arms wiggle. Although it might have been wind/hysteria). Maybe it’s because I’ve seen more ‘bad news’ scans than good, and I’m slightly traumatised by those grey, grainy images. Maybe I’ve just turned into a jealous old cow.

Whatever. The Facebook scan photo baby bomb turns a nice day into a bad day, and it comes right into your personal space without warning.

This excellent blog entry sums up very well what the FB baby bomb can do to a (mostly) sane woman: http://thingspeoplesaidaftermymiscarriage.blogspot.co.uk/2011/10/complete-guide-to-facebook-post.html

And I’ll tell you what, Facebook. I’ll stop posting pictures of the cat when you stop baby bombing me. Do we have a deal?

WELL, DO WE?

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The silence

Finding yourself in an EPU is not a cheerful experience. You’re there because something isn’t ‘normal’. Maybe you’ve had some spotting, maybe some cramping. Maybe both. Maybe you’re there because you’ve miscarried before, and they need to check everything has gone. Maybe you’re pregnant again, and they are checking to see whether things are progressing normally this time. Maybe you’re dates are ‘off’, and you’ve been waiting a week to see if there will be a change, or any growth at all, before they declare your miscarriage official.

You may have been admitted to A&E earlier that day. Or the day before, or the day before that, and you are now getting the scan they didn’t have the equipment or expertise to give you at that time.

In truth, I’ve had some very good and some very bad experiences in EPUs.Sometimes you are in waiting rooms with others like you, sometimes you have to walk past the happy ‘normal’ pregnant ladies, better times you don’t. Actually, even when you don’t actually see them, you can sometimes hear their babies heartbeats through the open doors from the 20 week scan ladies as nurses tend to them. The sound every anxious parent wants to hear? Not this one, not today.

‘Its not good news’. ‘It’s OK.’ You will hear one of these two things when you are at the EPU. But before you hear either, you will hear nothing. The silence. Of course they have to look and see what’s going on, and you want accurate information. But that silence seems to stretch out for an endless age. Screw dignity. The silence is the worst. News, good or bad, you can deal with, but not knowing tears you apart.

If anything could be worse than a scan at the EPU (no matter how good, and kind they are), its the devastation of getting the news at an official 12/13 week scan. There, they are not usually in the business of bad news, because statistically most of the bad news happens before you get to that stage, but missed miscarriages do happen and are discovered at routine scans. In these cases, you may be able to see for yourself on a mounted screen on the wall before the sonographer even needs to tell you. Then, go to the toilet and empty your bladder, try not to frighten the other expectant couples. You are the one no-one wants to think about, or to look at. You are the one that makes people say ‘I don’t know what I would do if that happened to me.’ Well, I know. You get on with it. You can’t change it just because you don’t like it, or because its hard.

I remember going for a follow up scan at UCLH having just learned at our local services routine 13 week scan that the baby, who was alive and well at 9.1 weeks had died at about 10. I had seen the sonographer before, and everyone was so nice. ‘How are you today?’, ‘We already know the baby’s died’. They checked, confirmed, asked me if I wanted to look (totally my choice, I did look). Then they discussed my options and booked my surgery. I was clear that I wanted the ERPC done by a consultant using ultrasound guidance because of my previous history. I’d have to wait a bit longer, but I was OK with that. Better get it done properly than have a repeat of what happened after MMC 2. I cannot praise the staff at the EPU at UCLH highly enough (http://www.uclh.nhs.uk/ourservices/servicea-z/wh/gynae/gdtu/Pages/Home.aspx).

Mumsnet’s miscarriage care campaign (http://www.mumsnet.com/campaigns/miscarriage-care-campaign) highlights the need for improving way miscarrying women are treated. Let’s face it, having a miscarriage is always awful. But its the little things that EPUs and A&E departments can do to make it slightly less traumatic which need to be addressed.

This video highlights the aims of the campaign. https://www.youtube.com/watch?v=Kl1vPEUNfw8

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The things we do

Tomorrow I’m going to put my body through a tough physical ordeal. I’m going to swim 2 miles in open water (http://www.greatswim.org/events/great-east-swim) for Tommy’s the baby charity (http://www.tommys.org/). I am quite apprehensive about it, to say the least.

Ever since I joined the unfortunate Recurrent Miscarriage club, I have felt compelled to engage in a range of what some might call ‘extreme’ behaviour (from the little reading I’ve done, people who have suffered trauma tend to do this). The lack of autonomy that any long term illness causes does make seems to make people want to do something to take some of the control back. So I swim. Outside. In lakes and waterways. Don’t misunderstand me, I enjoy it very much. But tomorrow’s two miles will be a challenge.

I want to write today about the part of my journey that took swimming away from me.

In May 2012 I had my second missed miscarriage (which I really didn’t see coming – I had, rather foolishly, believed people when they told me that I was unlucky, and it was very unlikely to happen again. Idiot.). The baby was showing no signs of coming away naturally, and so an ERPC (eugh phrase) procedure was booked for the next day. I’d had one of those in November 2011, so I knew what to expect. The procedure was uncomplicated, and I returned home to watch daytime TV and eat chocolate ice cream (not actually prescribed by the NHS, but helpful in their own way).

Two weeks later, I was still bleeding, quite heavily. I was still getting positive pregnancy tests. It was, as you can imagine, quite distressing. I put my mental recovery on hold while we tried to sort the physical stuff out.

After 5 weeks of ‘wait and see’, my GP sent me back to the EPU for another scan. There was some comparing of notes from my file and lots of to-ing and fro-ing. What was that mass?

MASS????!!!!!

A second ERPC was booked and a further scrape was done. You may be surprised to learn that these procedures are undertaken blind. Yes, that’s right. The surgeon CAN’T SEE WHAT THEY’RE DOING. This time, I lost a lot of blood (I’m not crying incompetence, I was red-raw inside and infection was taking hold. They wanted to make sure they got everything this time; it happens). I spent the day on the recovery ward having my bloods checked. Amazingly, because I am reasonably fit and active, I recovered well (thank you, swimming).

But it wasn’t over yet. I continued to bleed. We returned to the hospital again and this time saw the top consultant for a hysteroscopy (procedure where they take a look using a little camera). The mass was back. It couldn’t be removed for fear of causing damage (the dreaded Asherman’s syndrome, where scar tissue fills the uterus, and can lead to infertility). This wasn’t the news I was hoping for.

At this point, my local hospital referred me to UCH in London so that someone else could have a look. I must say that the EPU in UCH is like the Disney Land of EPUs. Its set up so well and everyone there is really great and taking care of you. More on them another time. On this occasion, I was scanned by 2 consultants who diagnosed retained products and booked me in for another ERPC in a few days time. I was blooded and consented and ready to roll.

The next day, I received a phone call from UCH, could I come back in NOW, the top consultant wants to have another look. So (not panicked at all), I returned to London. This time the plan was more conservative. What I had was a massive blood clot. My poor uterus (not following the stoic example set by the mind) had given up and simply couldn’t be bothered to heal. This was quite common and is sometimes observed in breast feeding mums, I was told. Its hormonal. Your body doesn’t know what to do and has given up. I was prescribed 2 weeks of HRT, which kick started the whole cycle and two weeks later I was back to ‘normal’.

I was, obviously, unable to swim (certainly not in lakes and waterways) for the whole summer. Gutted.

I shall have to remember how much I missed it when I’m half way round Alton Water tomorrow!

http://uk.virginmoneygiving.com/RossisRiding (My DH is also fundraising for the same cause by riding the London 100 in August, hence the shared page.)

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The hardest job in the world

No-one is disputing the undeniable fact that parenthood is tough. You don’t get to sleep, go to the toilet by yourself, or hold a conversation with another adult, and you usually have something wiped on you. This creates something of a paradox, since every parent I know swears that they wouldn’t change a thing, and it’s totally worth it. And yet they also complain.

I know from my experience of teacher training that worthwhile things can also be hard, make you cry and wring your hands and wish for the life before. And still you don’t stop it.

My problem is, I literally don’t know what I’m missing. I understand that the love you feel for your child overwhelms you; you didn’t know it was possible. You had no idea that you had that much love in you; to give away, selflessly. I understand it, but I don’t know it. I can only have faith that its true.

There have been times when I’ve felt like the worst, most selfish and unpleasant person that the earth ever spawned; I couldn’t type here the uncharitable thoughts I’ve had about parental complaints. The sweetest, most kind friends are made my tormentors with their bumps and their baby showers. I don’t like to be caught out. I need to know when a brave face might be required. It’s a bit like running in to an ex with a beautiful, successful and intelligent wife in tow, when you’re picking up your dog’s poo and in need of getting your highlights done. It makes you feel bad when you weren’t braced for it.

I actually find pregnant women more difficult to deal with than actual babies. This is probably because, in my mind, being pregnant I have had and lost, but the whole messy business never got near to a sniff of a T.H.B. (take home baby) of my own. I am actually starting to wonder if those sex education lessons got it all wrong after all; does pregnancy really lead to babies?

I’m not awful enough to really think that other women don’t have their own genuine fears, problems, aches and pains. But who knows what to say to the one with her bloodied nose pressed up against the nice clear social glass? With those I know well, its: ‘How are things with you?’, ‘Oh, you know. Nothing yet.’ Sometimes, in my head (and once out loud) I shout ‘You can’t out-complain me! Your baby is alive and mine is dead!’ And yet, however angry and bitter I feel, I try not to show it, because it’s not their fault that this is happening. And, there’s every chance that they’ve been though scary and sad times too, and maybe they don’t talk about it. The statistics tell us it’s quite likely.

And that’s why I like to keep work at work, and I carefully choose where and with whom I socialize. Got to keep up the act. Sometimes, I go where I know a pregnant friend will be, and I’m fine. Until, that is, we get to the invisible window and my mummy friends walk on ahead and leave me peering though wondering what it might be like on the other side.

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Another frustrating day…

This is an entry I posted on a particularly soul searching day back in March last year. I’m reposting it here because I’m closing my other blog down.

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One 30 something woman

A couple of weeks ago I went for an ultrasound scan. How very exciting! Sadly not. This was the 6 month check-up following a Summer of disasterous adventures in what happens when a miscarriage goes very badly wrong. Yes, it’s true. My second missed miscarriage in 6 months turned me from the 1 in 5 to the 1 in 100 and beyond as I exhausted the gynaecological expertise of an entire hospital.

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Dark days and how much I miss the cat

There have been times when this nasty business has really got me down. If you count my miscarriages (and, of course, I do), then the total bereavements that I have suffered in the past 3 years is an impressive 8. Some were expected, and part of the natural order of things (grandparents – sad, but natural), and my Father in Law (untimely, too soon), the babies and all of the associated hospitalization that went along with that. And then there was the cat.

After two miscarriages, back in October 2012 (the 6th, 12:30 on a sunny Saturday afternoon), there came a knock at the front door. A neighbour asked, “Are your cats in? There’s been an accident.” One cat was in the back garden, but I had not seen her brother since I let him out that morning. My blood ran cold. Of course it was him, and we took his body to the vets for cremation (Vet: “Let me just check for a heartbeat,” Me: “He’s got rigor-mortis.”)

I know he was just a cat, but I felt so damn angry at the universe for taking him away. It won’t take a degree in psychology to work out how much displaced love is re-focused on our furry friends. Never judge the mad cat lady, maybe she suffers from miscarriage.

It took me over a month to emerge from the depths of depression that the loss of Mac plunged me in to. It has been suggested to me that it was a ‘real’ bereavement that finally allowed me to get in touch with the confused and unfulfilled feelings of loss from my miscarriages, and perhaps that’s true.

Grief is a strange thing. I got a new kitten “because I can at least control that.” Whether it’s the next phase of mourning or just the whole shitty lot compounded together, I do feel like a bereavement veteran. It’s not a great place to be.

I feel mostly OK now. Most of the time. I still miss the cat. C’mon, universe. There was no need for that.

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Acronyms and how hospitals work

When you start getting intimately (and I do mean intimately) involved with the NHS, you need to learn a new language of acronyms. And you need to start to get used to not being offended or upset by some of them (ERPC – Evacuation and Removal of the Products of Conception).

I was about to find out about the EPU (Early Pregnancy Unit). After a weekend of little tiny bits of pink spotting (which I described as bleeding at the time… little did I know), I decided to call NHS direct (old version).

The thing about NHS Direct (and I want to point out that they’ve always been very nice when I’ve called) is that as soon as you say the word ‘pregnant’, all roads and flow charts lead to A&E. As far as the script is concerned, when it comes to babies, children and pregnant women, they’d rather be safe than sorry (and rightly so).  Throw in to the equation the twinges of an old shoulder injury, and it’s Red Alert, because shoulder tip pain is one of the signs of an ectopic pregnancy. Very serious, potentially. The problem is, there’s usually nothing that anyone can do in cases of suspected early miscarriage. So, unless you are pumping out volumes of blood or severely cramping (actually, even if this is what’s happening), you can expect to spend a very long time in A&E if you follow the advice of NHS Direct.

So, off we set for our local A&E. We wanted to beat the rush. We see the triage nurse. They don’t deal with early pregnancy there, so we sit in a cubicle for a couple of hours and then they put me in wheelchair, then in to an ambulance and drive me to another hospital to see if they know what to do with me 20 miles up the road. My husband follows on in the car. I’d never been in an ambulance before. How exciting!

This was going to be a very long day.

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