* yes it is, when it comes to miscarriages
So, the HBB is sadly a recurrent miscarrier. That means I have had 3 miscarriages in a row. And for those in this unfortunate predicament (1% of all women apparently), and for those going through a heart-breaking 1st or even 2nd miscarriage, given there is SO little help out there for us, I thought I’d write down some things I know about it. I hope, as always, this helps.
- The sadness is all-consuming
I am heartbroken to lose a thing I loved so much. My heart feels heavy – particularly first thing in the morning and often last thing at night. I had so much love for this baby, I wanted it so badly, and each time I got pregnant I loved it just the same (even though I tried not to).
Is it better to have loved and lost than not to have loved at all? Nope. I know trying and failing to get pregnant in a year would be hard, but getting pregnant and miscarrying regularly is harder. “You should feel pleased you get pregnant so easily” is a hollow compliment.
It is also hard because I want to be happy mummy to my toddler. But mummy IS sad right now. But maybe it’s OK for children to see their parents being sad sometimes – it helps them to know they can express their emotions too.
- Anxiety and Stress
This fills me with unhealthy and angry adrenalin and keeps me awake for nights on end. For one thing, my hormones have gone up and down like a mad rollercoaster – I have been pregnant and then not pregnant 3 times in the space of 9 months – which is stressful for my body.
And then as with any stressful life event there are tangible anxieties that stem from it – am I letting people down at work? Should I tell people? Why do I feel so ashamed? What if something’s wrong with me? Will they ever find out what is wrong? Is this affecting my friendships or my relationships or my other child?
Finally, there is stress about hypotheticals – will this happen again? How many times? Will I ever have another child?
I’ve learnt two things that help with this. Mindfulness, to try to live in the present and appreciate what I have, and not worry about the future. And secondly, to treat these worries like floating lanterns – acknowledging each as a valid worry, then letting it go and float up into the wind.
- I’m angry
At the world.
At mother nature.
At my body.
At the NHS.
At the government.
At Facebook for unannounced baby bombs (miscarrier lingo for pregnancy announcements and newborn photos).
4. Sometimes friends and family don’t know how to help
While the vast, vast majority of my friends and family have been brilliant, some have been a bit distant, and some unsympathetic. I have also noticed that after 3 miscarriages, the texts and calls faded a bit. I wonder whether people just don’t know what to say anymore; or if some think by the time you have 3 you’re used to it? Actually, 3 is the hardest, the lowest ebb. I’ve needed to reach out to friends to say I need help. For a tough cookie like me, that’s been hard, but I think you need to tell people you’re in pain and need a bit of love. It’s the love of friends and family that has kept me going.
The fact is – when you are grieving you want that grief acknowledged, and not belittled.
You can still grieve a lost child if it was only alive for a few weeks.
You can still grieve a lost child if you already have a child.
You can still grieve a lost child if the chances are you will have another child one day.
You can still grieve a lost child if you’ve already lost other children previously.
You are not only grieving a lost child, but the loss of hopes and dreams, the loss of plans and the family you wanted, and that you can never get back.
You are grieving and there is sadly nothing you can do to make people react in the way you want them to. All you can do is avoid people with unhelpful responses until you feel stronger.
5. Jealousy is a hard pill to swallow
I want to be a good friend, but it is hard sometimes to deal with friends who are pregnant, or who have the family I wanted (2 kids with a 2 year age gap please!). For some people it seems so easy.
It’s not that I don’t want them to be happy – I do. But sometimes it makes my stomach twist with longing to be reminded of something I want so badly, and something I can’t have. And it kills me every time my toddler cuddles a baby and says he loves it – all I want is to give him his own sibling to cuddle.
I have valiantly attended baby showers and cuddled newborns like a seasoned politician, coming home to blub on the sofa, but now I feel I need to give myself a break, and hope my friends will understand
6. Miscarrying regularly takes up a lot of time
If I recall the last year – most of 2014 for example – I have mainly spent it miscarrying.
I have missed a whole load of work, lots of events, holidays and parties. I have spent around 8 months not drinking alcohol, and the remaining 4 months drinking excessive alcohol. I have thought about starting a gym regime 3 times and then stopped because I got pregnant, and then thought about starting again. I have got fat and dieted 3 times. I have unpacked and re-packed my maternity clothes 3 times.
Several of my friends got pregnant months after I first did and have now had their babies. I’m reminded of an egg and spoon race where we all started together but I kept dropping that damn egg and keep having to go back to the start.
I am in a constant state of limbo.
I have been pregnant for 9 months and yet I have no baby.
7. Channelling a happy sheep (bear with me on this one)
There is evidence (if you read Dr Regan’s book on miscarriage) that by just being looking after – monitoring and hand-holding – the likelihood of having a successful pregnancy that ends in a live baby, increases from around 65% to around 80%. And that’s with no medical help or intervention – just extra scans and care.
That’s 15% of women who will have a baby JUST BECAUSE THEY ARE LOOKED AFTER AND GIVEN SOME TLC.
And that’s something the NHS should heed because (see below) if you have 1 or 2 miscarriages, they do precisely jack shit to help you out. Unless you are one of the lucky ones with a sympathetic GP or you pay for private help, you are left on your own, bleeding and alone, trying to work out what is going on yourself – mainly through Dr Google and Mumsnet.
That’s 15% of women who will take home a baby just because they are being cared for. That’s 15% less scans and GP visits, less EPU trips and ERPC operations, less anaesthetists and surgeons, less time off work, less boxes of tissues, less counselling and pain and grief. Just because they get some care.
My lovely midwife friend, the daughter of a sheep farmer, described this phenomena differently. “I would never expect a sheep to give birth if it was scared”, she said.
And so here I am, channelling a happy sheep.
8. Being the perfect plant pot (again bear with me)
Here is something practical we miscarriers can all do. This is from a friend who visited Zita West,who I’ve heard good things about. Sadly, her consultations aren’t cheap, however it is this sort of pro-active, helpful advice that miscarriers like to hear.
A friend who visited one of her acupuncturists, was told birth was like planting a seed – and your job – or your uterus’ job – is to be the best soil possible.
So how do you do that? Well, cut out booze, eat well and exercise. Get your partner to cut down his booze too, and take a supplement. Try to de-stress – acupuncture and reflexology helps. Which is easy to say but after a miscarriage you are bloody knackered and want to drown your sorrows in a vat of gin. But when you get strength back, it is something to think about.
Supplements may help too – evening primrose oil, Agnus Castus, Pregnacare, Q-10, to name but a few.
Will it help? Who knows, but it makes you feel like you’re doing something.
9. Recurrent miscarriers become walking medical dictionaries
Only those who’ve lost several babies will be familiar with terms like luteal phase defects, uterine NK cells and antiphospholipid antibodies. You need to know this shit because sadly the medical world often needs to be prodded to do any testing, and often don’t agree amongst themselves what the best course of action is.
The NHS (and BUPA) won’t do any testing until you’ve had 3 miscarriages. There is some statistical evidence for this – given only around 50% of tests actually come up with something.
The NHS when you have 1 or 2 miscarriages
This kills me for two reasons.
First, it shows a complete lack of TLC and care for miscarrying women, and completely disregards the hideous grief that accompanies a miscarriage. Remember that 80% statistic?
Second, basic blood tests (they say in half of cases you never find a cause – which surely means in 50% of cases you do?) could highlight a problem which could be rectified. And that could mean 50% less miscarriages – less scans, less surgeries, less tissues, etc etc. In my case, that is particularly painful as one consultant believes my problem is a “simple hormonal issue” that turns out could have been solved with an £8 prescription drug.
Since my 3rd miscarriage, I’ve been offered NHS recurrent miscarriage testing but its slooow – taking months which if you’ve already been miscarrying for months is hard to bear, particularly if your body clock is tick-tocking or that age gap is steadily widening. So I’ve augmented this with private help – costly but at least it happens quickly and you know all your bases are covered.
The tests you can get are**:
** I’m no medical expert, just a recurrent miscarrier with a curious mind and a subscription to Mumsnet
- Hormone levels – this should be done by the NHS and is typically done at the start of your cycle and then around day 22. An example of this is a luteal phase deficiency which means you aren’t producing enough progesterone after implantation. This can be remedied with progesterone suppositories and in some cases, Chlomid.
- Blood clotting – things like thrombophilia, tested by the NHS. If your blood clots too much, it won’t allow blood to flow to the placenta. This is remedied with aspirin or heparin injections or both. Some people take aspirin “just in case” but others suggest this is dangerous. After 3 miscarriages, I defy anyone to not be a “just in case-r”.
- Immune problems – the NHS tests for some immune issues, but won’t test for NK cells and nor will BUPA. This is because it’s a controversial issue and some believe it’s not proven. But it’s not proven perhaps because there is a remarkable lack of knowledge and research in the world of miscarriage. NK cells are natural killer cells – helpful for killing cancer and other bad stuff, but in elevated levels in the uterus, they can attack a growing embryo. I wonder if I have this because I had terrible hives with my toddler and this is an immune issue. The only people that I’ve found to test for this are: Dr Thum at the Lister, Dr Shehata at Epsom hospital and Harley Street, and Prof Brosens and Quenby who are doing remarkable pioneering work in Coventry. Lots of people swear by these guys but you will have to pay (£360 in Coventry and up to £2000 for Shehata and Thum). Coventry and Shehata have a remarkable success rate but mean waiting for a couple of months at least post-miscarriage for testing before trying again, which for many of us is hard to do. The remedy for this is steroids.
- Genetic problems – You got a bad egg. Or bad sperm. Or bad sperm and egg combo. Especially prevalent in us ladies who spent most of our twenties hanging pissed off a chandelier in dodgy nightclubs in Ibiza. I can’t see what else you can do with this other than keep trying for a good ‘un, or get genetically screen IVF embryos, at a whopping price tag.
Monica from friends – is my uterus an inhospitable environment?
- Try, try again
Something like 75% of recurrent miscarriers will go on to have a successful pregnancy eventually. But when will this be? I’ve now met women who’ve had 5, 6, 7 miscarriages. I’ve heard of others who’ve had up to 10. Where does that leave your life – your marriage, your existing children, your work? Where does that leave your body and your mental health?
The NHS often suggests you keep going, that it’s a numbers’ game.
And we will. That is what my body tells me to do. But for a recurrent miscarrier like me, this is little comfort.
- I think sometimes I’ll only get over this when I have another baby
But it scares me how long that may take. And what I do if it doesn’t happen at all.
- I feel I need to do something to remember these babies
Because I never want to complain about being pregnant, or how annoying my kids are, or how awful the birth was. Because right now I would be just so happy to be there, no matter how bad it was.
This year of my life has been remarkably hard, one of the hardest years I’ve ever had to face. Some people plant trees, or get a tattoo.
I’m not sure what I’m going to do, but I never want to forget what I’ve been through, and I never want to take the good times for granted. I also never want to be bitter, or regret this year as its just part of my life and part of my story and my family’s story.
For my father we put up a bench. I’d welcome your thoughts on what to do for my lost babies.
Update May 2015: To my surprise (and probably thanks to the fact that I’ve been writing about miscarriage recently rather than what to pack in your hospital bag) I’ve been nominated for the Best Baby Blog category at the MAD blog awards. I suspect I’ve got as much chance of winning as I have regaining my pre-baby weight, but what the hey, if you did want to nominate me then please feel free. Click on the link below and thank you.