Monday, 10 October 2011

The deep dark bits: miscarriage

I don’t generally blog about me; well, I do, but in the I did this sense, rather than I felt this, or here are the deep, dark bits of my life sense.  This blog is going to be an exception. Once I was editor of the newsletter of my local NCT branch. The first issue I did was on miscarriage. I wrote about mine; a friend wrote about hers, and the Miscarriage Association wrote about what needed to be done by the NHS to improve how women and their partners were treated during and after miscarriage.

We said things like: don’t put miscarrying women in wards with women having terminations, or worse still in ante natal wards. Treat women sensitively.

That was 17 years ago. Mumsnet is starting a campaign on how the medical service should treat miscarriage, and I’m sure you can work out what they’re asking for.  17 years later, not a lot has changed. What happened to me is still being repeated, and what we asked for then still has to be asked for now.

Miscarriage is still not something that is talked about. Growing up, I was dimly aware it happened, but as far as I was concerned, people got pregnant, and they had babies. That was generally that. I thought I’d have a large family, and was also quite hoping for large amounts of dogs and ponies. Too much Pullein-Thompson. Getting pregnant often enough to achieve part of that aim certainly wasn’t a problem: I got pregnant just like that. Holding on to the baby afterwards, however, was a problem. I have two children: five pregnancies, but two children.

After getting over the initial shock of being pregnant the first time, which wasn’t exactly planned, I settled down, and did what I always do when facing something new: I bought a book. Up to 13 weeks is the danger period, it said. After that, you are probably alright. Late miscarriage is quite rare.

13 weeks came and went. I relaxed a bit. By 15 weeks, I was starting to need to pee a lot. I consulted the book, which said that this did happen. Mmm, I thought. I had a feeling that what was going on with me was possibly not what the book meant. Give it a few days, I thought, and then off to the doctor if there’s no improvement. That weekend, we went into town on the train. I sat there, feeling more and more ill, and by the time we got to Waterloo East, told Jonathan I had to get off the train. We ended up in St Thomas’s, who diagnosed a urinary tract infection, and packed us off back home to South East London, loaded with antibiotics. I made it home, and then collapsed with violent shakes and vomiting. The on call doctor came out, by which point I’d stopped shaking. He told me to carry on with the antibiotics, and take the week off work.

No one could tell me whether the baby would be alright. I had my first ante-natal appointment due at the end of that week. I rang the hospital (Greenwich) and asked them what I should do. Just come to the appointment, they said. So, I spent the week in bed, glugging water frantically, swigging antibiotics, and seeing various on-call doctors (never actually my own) as I threw up and generally was not well. We went to the antenatal appointment with a university friend of mine who was also pregnant, and whose appointment was at the same time. Poor things. It was their first baby, and their first appointment, and there they were, obviously excited but trying not to show it too much, as we sat there, faces drawn and not really expecting the best. We saw various nurses. “Oh, you’ll be fine,” they all said. One of them hooked me up to listen to the baby’s heart, and there it was. A regular whoosh and boom. It was alive. Even now, over twenty years, later, the thought still reduces me to tears. Poor little baby. It did fight hard.

We saw the consultant. The thing was, by that stage I was fairly certain the outcome was not going to be good. Heartbeat and all. I described everything that happened. I thought that my waters had actually gone, and the consultant said he thought I was right. He couldn’t say exactly what would happen, but the outlook wasn’t good, especially as my lovely urinary tract infection was still raging along, antibiotics and frantic drinking notwithstanding.  All we could do was go back home and wait.  Nothing we could do was going to make much difference. By that point we were both relieved someone was prepared to be honest. All medical staff up until that point had simply not listened, once they’d worked out I was beyond the magic 13 weeks; and anyway, there I was in the antenatal clinic, full of lots of pregnant people. Going wrong didn’t seem to be an option.

Back home we went. During that week, I’d felt the baby move, but the day after the antenatal appointment, it stopped. I knew what this meant, but lay there hoping the flutter would start up again. It didn’t. The next day I was gripped by the most almighty pain. I took two paracetamol and screamed for Jonathan, the second of these two being I now realise the more sensible thing to do. After some drama, and a lot of blood, Jonathan rang the ambulance. One appeared fairly swiftly. They couldn’t, they said, take me anywhere, as I needed a transfusion, and they couldn’t do that. No ambulances that could were available. They rang for a doctor who could do transfusions. He got stuck in the Blackwall Tunnel. I lay there, aware of a rising air of panic amongst the paramedics, wondering if I might not survive, in 20th century Britain with a large hospital 5 minutes down the road.

This next bit is the hardest thing to write, and I have had to have a few goes at it over the weeks since I knew I would be writing this piece. Our baby was still there; it has been born and I had seen it fleetingly. I wanted to see it properly. I was also, in the midst of the chaos, scared, desperate, and wanting to survive. I thought I needed to stay in control. If I saw the baby, I wouldn’t, so I didn’t. I have bitterly regretted that decision ever since. I know nothing would have changed; the baby was still dead, but the least I could have done for it was looked at it, and I didn’t.

At last the doctor appeared and gave me a plasma transfusion, thereby rendering me completely useless for blood donating purposes in years to come, though none of us knew that at the time.

I was shifted off to Greenwich District Hospital, and an ERPC – the snappily named Evacuation of Retained Products of Conception: making sure the womb was properly empty, in fact. When I came round, I was aware of the most extraordinary feeling of physical relief: my body was simply thankful it didn’t have to struggle any more. My mind didn’t feel like that though. I wanted my baby. I lay there in the dark, trying to cry quietly. A sympathetic nurse appeared and asked me what was wrong, and I told her I’d just lost a baby. All sympathy promptly vanished. “Oh, is that all,” she said. “It’s very common. Be quiet now, or you’ll wake everyone else up, and they need their sleep.”

If I could have got out of the hospital then and there I would have, but I was attached to a drip; on intravenous antibiotics, and both hands were bandaged after numerous failed attempts to insert a canula. What I wanted to do was grieve; bawl and weep, but instead I mentally shoved it all away. Hospital obviously wasn’t the right place for any of that to happen. Grieving would have to wait until I got out. I had a long time to sit and think, so I worked out what I thought I could cope with without giving way completely. A couple of days into my hospital stay, I asked a nurse if I could see the baby. Even as I was explaining that I knew it had been born complete because I had seen it, she was whisking out of the ward, saying over her shoulder as she went that all there would have been was bits so there wouldn’t have been anything to see.

The kind nurse who did sit with me, and who I asked again, told me the baby would have gone for a post-mortem by now, so there wasn’t much that could be done.

What I did not know until much, much later, was that the baby had been left behind when I was carted off in the ambulance. Jonathan got back home from a traumatic time at the hospital, to find the baby still there on the floor. He sat with him all night until a midwife arrived to pick him up the next day. I didn’t know for years that the baby had been a boy; not until I went for investigations with a consultant, now being a recurrent miscarrier and therefore entitled to treatment. Jonathan was told not to tell me the baby’s sex as this might apparently make me disintegrate altogether mentally. I asked my GP out right about the baby’s sex when I went for a follow up appointment, and he refused to tell me. It wasn’t relevant, he said. I pressed the point, but he wouldn’t tell me. He refused to tell me the sex. He refused to tell me the results of the post-mortem, which I knew there had been. They weren’t relevant either, apparently.

As I also found out years later, there was nothing wrong with the baby. I’d simply been too ill. My body couldn’t cope with being pregnant and being ill at the same time, and had chosen not to be pregnant.

My next two miscarriages were not such events. Miscarriage two was early – about 7 weeks, and happened while I was at work. I’d not felt from the start that the pregnancy was ok, so wasn’t surprised, and wasn’t particularly upset. Miscarriage three was later – 12 weeks. By now, I knew my way around the sytem. I was desperate to see the baby, if baby there was. There wasn’t anything to see, but at least I knew that, because I had looked. I knew I’d have to have another ERPC, as yet again, the placenta hadn’t detached properly. I knew that after three miscarriages I could have investigations into why, so made sure the unsympathetic doctor whirling in and out of my room in A&E at lightning speed knew that.

I had the investigations, which turned up nothing. Just bad luck, said the consultant. It happens. I got pregnant again, for the fifth time, and had the slightly surreal experience of chairing a conference for the Miscarriage Society whilst being pregnant, in the pre 13 week danger zone, and not having told anyone save for Jonathan that I was pregnant. Miranda made it. We’d decided that if she didn’t, we’d stop. It was just too wracking to go through the possibility of more miscarriages, and Fred was old enough by now to know I was disappearing off to hospital, and to want to know why, and to know why Mummy and Daddy were sad. We were lucky, and we have our two children.

I have massive respect for anyone who can go through miscarriage after miscarriage as they try to have children. I certainly couldn’t have gone through any more. All these years later, what I remember best is the people who were kind. I remember the nurse who sat and talked with me whenever she was on shift. I remember the women on the ward with me, mostly hysterectomy patients, who made the unspoken but universal decision not to mention the loud, happy, woman who’d had the termination and left on the first day I was there, and who were quietly sympathetic. The ward sister who let Jonathan come in in defiance of visiting regulations for days on end. The anaesthetist and nurse who held my hands as I cried and cried before going into theatre for the second ERPC, having held it together up until then. The consultants who were honest. The woman I’d not got on with terribly well with at work up until that point, who sat in my office, and was so lovely I cry again to think about it now. And my beloved husband, who held his wrecked partner together despite being prostrate with grief himself. Lost babies belong to their fathers as well; but it’s the mothers who tend to get what sympathy is going. Everyone asked him how I was: very few, if any, how he was.

A lot of the care I got was excellent; but some was almost catastrophically bad, and certainly crashingly insensitive. Being sent the appointment card for my next ante natal appointment a couple of weeks after the first miscarriage was a particular high spot. Greenwich District Hospital must have thought I was a very stroppy mare when I was in there after miscarriage 3. By that time I knew what they were likely to get wrong, and snarled and snapped until I was certain I’d been removed from the antenatal lists; that I’d seen any possible baby there might have been, and that I was referred. It’s a pity it had to be like that. What I wanted was care, not to have to protect myself from an imperfect system.

Here’s the Mumsnet code, for all those women still needing care, and protection:

1.  Supportive Staff
GPs, Early Pregnancy Assessment Unit (EPAY) and A&E staff should be trained in communication techniques (including things NOT to say to women who are miscarrying), basic counselling skills and the psychological effects of miscarriage. Follow-up appointments and/or counselling for those who feel they need it should be routinely offered after miscarriage.

2. Access to scanning
Access to scanning facilities in the case of suspected miscarriage should be easier. This could mean Early Pregnancy Assessment Units (EPAUs) opening seven days a week and/or portable ultrasound and trained medical staff being available in A&E and gynaecological units at all times as standard. Those who are miscarrying naturally at home should have the option of a scan to check that there are no ongoing complications.

3. Safe and appropriate places for treatment
Women undergoing miscarriage or suspected miscarriage should be separated from women having routine antenatal and postnatal care, or women terminating an unwanted pregnancy. EPAUs should be sited in hospitals' gynaecology, rather than antenatal, departments or next to A&E departments, to ease women's referral route. Waiting times in confirmed as well as threatened pregnancy loss, but, in particular, for women who need surgery, should be kept to a minimum and not be spent in antenatal or labour ward settings.

4. Good information and effective treatment
Everyone who has a miscarriage confirmed should have the three options explained to them: 'natural' miscarriage; medication to speed up the natural process; and surgery. What each option involves, the amount of pain and discomfort that might be experienced, and the likely timescales for each should be explained clearly, sympathetically and honestly either by trained medical professionals or in a leaflet. Women miscarrying at home should be offered appropriate prescription pain relief. In the case of miscarriage occurring in hospital, doctors should discuss with the parents what they wish to happen to the foetus (i.e. it should not be disposed of routinely without prior consultation). Consideration should be given to renaming the surgical procedure Evacuation of Retained Products of Conception (ERPC), as many parents find this confusing and upsetting.

5. Joined-up care
Community midwife teams and GPs should be informed immediately when miscarriage has occurred, and subsequent bookings and scans cancelled, to avoid women who have miscarried being chased by HCPs for 'missing' pregnancy appointments.



15 comments:

MmeLindor said...

Jane. Thank you so much for sharing your story. It is so sad, I wept for you and your lost babies.

It is also a sign that the campaign is important, that we should be making a lot of noise.

17 years is a long time to wait for improvements. Lets hope we see some this time.

Sally Donovan said...

Thank you for sharing your story so honestly. It is a very hard experience to write about but it's only by voicing the awfulness of the system that something will be done to improve it.

Kim said...

I'm in tears whilst reading this.
I've also had 5 pregnancies, but only have two children, and our first loss was late.
I was lucky in that I had a good standard of care.
I can't begin to imagine what you went through.
Thanks for sharing your story.

Jane Badger said...

Kim, I'm glad things were better for you, and very glad that you do have two children.

I am still staggered that so little seems to have changed in the years since we lost our babies.

Mme and Sally, yes, let's hope something changes this time.

Anonymous said...

Jane, it's harrowing to read this, let alone experience it. I have a close friend who has been through something similar recently, and have been shocked to hear of the insensitivity shown by some of the professional staff - things don't seem to have moved on far. It's scandalous really that the Mumsnet campaign is still needed.

Frances said...

thank you.

Sophie Walker said...

Hello Jane. Thank you for your bravery in sharing this with us and for working to make things better for women who find themselves in the same situation now. Your experiences were terribly upsetting to read about. I'm so sorry you had to go through such heartache and only hope that lessons can be learned. Best wishes.

Emily O said...

Made me tearful reading this. Very sad and it's also sad that healthcare is very slow to be responsive to women and their partners who go through these ordeals.

Jane Badger said...

The thing I find so difficult to understand is why healthcare is so slow. There have been conferences; guidelines etc, and there are good models of care (ref Luxembourg in one of the blog hop posts) so why does nothing change?

Jane Badger said...

So slow to change I mean. Typing too fast. Brain not engaged.

Sue Howes said...

I have a feeling it is because healthcare is run by men!

Jane Badger said...

I can see what you mean, but I wonder if the thoughtlessness and brushing under the carpet is something like the way cancer used to be treated: don't mention it, or you might get it. Sympathetic magic maybe (or unsympathetic, to be more accurate.)

printingamerica said...
This comment has been removed by a blog administrator.
get pregnant after miscarriage said...

Getting pregnant after miscarriage is often seen as a much heavier task than it actually is. Many women are worried that they might not be able to get pregnant after a miscarriage or that they might have another miscarriage if they do.

Jane Badger said...

Yes, that's true. I think in my case I was far more worried about the hanging on to the pregnancy than I was the getting pregnant bit.