'What I wished I'd known before my first miscarriage'
Truthfully, before I had my first miscarriage seven years ago, I didn’t think about pregnancy loss all that much. Even when I found out I was pregnant, I assumed it didn’t really apply to me. Miscarriage was something I thought happened to other people – and even then, only rarely. After all, I was healthy, I’d only just turned 30, and I was carefully following all the lifestyle advice that pregnant women are bombarded with down to a tee.
Sure, knowing about the hypothetical possibility of miscarriage was why my husband and I had been waiting to tell people about that first pregnancy until after 12 weeks, in case ‘something’ happened. And yet it remained a tenuous half-thought. I didn’t really believe 'something' would happen to me… until it did.
In other words, I’d fallen for the many myths and misconceptions that still surround the subject of pregnancy loss. Which is why it’s so important that we keep the conversation around it going all year round, not just during Baby Loss Awareness Week – which sets out to honour and campaign around a spectrum of experiences, including miscarriage, ectopic pregnancy, termination for medical reasons, stillbirth, and sudden infant death syndrome.
Miscarriage is estimated to affect one in five pregnancies during the first trimester (before 13 weeks) and 1 to 2 per cent of pregnancies in the second trimester. As many as one in four people will lose a pregnancy in their lifetime. While an estimated one in twenty will go through it more than once. One in 100, like me, will go on to have recurrent miscarriages – that is, more than three in a row.
And yet, despite the numbers affected and despite increasing openness around the subject, there are stubborn, unhelpful ideas that linger. Here’s what I wish I’d known…
It’s not ‘like a heavy period’
There is something I remember feeling, very clearly, after the midwife confirmed I’d had a miscarriage. Underneath the shock and the ache of grief building in my chest, was another emotion: disbelief. How could I have not known it would be like this?
I’d started bleeding a few days before what would have been our 12-week scan. I’d gone to bed with the reassuring words of my GP in my head: ‘It doesn’t sound like a lot of blood – try not to worry’. She’d booked me a scan at our nearest early pregnancy unit, just to check everything was OK.
But when I woke the next morning, it was clear everything was very far from OK. It was also clear that a line I’d sometimes heard about early miscarriage being ‘just a heavy period’ was very far from the truth. The blood loss was extreme. I had flooded our bed sheets. I kept passing clots. No one had warned me.
At the hospital, in less than an hour, I bled through two doubled-up sanitary pads, my jeans and winter coat, onto the plastic, waiting room chair. A rhythmic, vice-like pain gripped my abdomen at intervals. It wasn’t the dull ache of my usual period pain. It was, I realised, like contractions. The cold logic of this slithered in my stomach. It made perfect, awful sense. They might have felt like contractions – but there would be no baby coming home with us.
Sometimes there’s no bleeding at all
Later that same year, I unfortunately learnt that ‘just a heavy period’ can be misleading in another way: sometimes there is no blood at all when you lose a pregnancy. I went on to have another three miscarriages – two of which were diagnosed on routine scans. Beforehand, I’d had no pain, no bleeding and I still had pregnancy symptoms, including nausea. It felt like a cruel trick my body was playing on me.
Known as a ‘missed miscarriage’, it’s a diagnosis that requires a choice to be made: Did I want to let nature take its course and wait for the miscarriage to start by itself? Did I want to take medication to get things going? Or did I want to have surgery, under general anaesthetic to remove the pregnancy?
None of the options on how to ‘manage’ a miscarriage feel like they would constitute a good decision. It all feels profoundly wrong: being forced to pick something that is the exact opposite of what you want. Of course, you also know that you cannot stay as you are. The thought of continuing to harbour winter inside, where once there was spring, is as untenable as the thought of letting it go.
If you find yourself facing this impossible decision, know that you are entitled to ask questions – and to take your time. After both my missed miscarriages, I went home to think about what would be the least worst option, rather than be pressured into making a snap decision. Also - as your medical team should reassure you - whichever option you choose, research shows it doesn’t affect your chance of conceiving again.
The process can take weeks
Far from being decisively over in an instant – a bleed, a fall, a sad scan – as is often depicted in popular culture, a miscarriage can be a confusing, drawn-out series of events. You might be sent away from one inconclusive (but unpromising) scan with no other advice but to come back in a week’s time. Or, sometimes, medication taken after a missed miscarriage does not work.
In my case, after my fourth miscarriage, I had to wait for further tests to confirm that the pregnancy wasn’t something called a ‘molar pregnancy’ – when a mass of abnormal cells develops and burrows into the womb lining invasively. Thankfully, it wasn’t, in the end, but had it been a molar pregnancy, then further specialist treatment could have been required to ensure all of the invasive tissue was gone.
Such complications add uncertainty, and sometimes fear, on top of everything else. Sometimes you can feel as though all you are doing is waiting. Waiting for more bad news. Waiting for it to be over – actually over. Waiting in a suspended state of almost-grief.
You have a right to time off work
There are, then, many reasons why you might need time off after miscarriage. Though your legal rights can feel unclear. While there isn’t yet a statutory right to paid time off after pregnancy loss before 24 weeks, any time off required during and after a miscarriage should be recorded by your employer as pregnancy-related sickness, which means that it cannot be used against you in disciplinary proceedings or if they start making redundancies. There is also no time limit to the amount of pregnancy-related sickness leave you can take, although your GP will need to sign it off.
Your mental health matters too
Months after my first miscarriage – still feeling like a shell of a person and liable to cry at the sight of another woman’s full-moon baby bump – I often felt that I wasn’t coping; like I should be over it by now. Yet, I now know the impact on mental health can be profound. In 2020, Imperial College London researchers published a compelling study that found that nine months after a miscarriage or ectopic pregnancy, one in five women met the diagnostic criteria for post-traumatic stress disorder (PTSD), experiencing intrusive thoughts, nightmares, or flashbacks. Moderate to severe anxiety and depression were also commonplace.
What helped was anything that reminded me I wasn’t the only person who felt this way: catching glimpses of myself in stories shared online, in forums, on social media and in support groups, like those run by the Miscarriage Association. Now there are even more places to turn: podcasts such as The Other Mothers and The Worst Girl Gang Ever. And organisations such as Petals, which offers pregnancy-loss specific counselling.
It can be difficult to get answers
Currently, those who’ve experienced a miscarriage do not ‘qualify’ for any tests or extra support until they’ve had three miscarriages in a row. This may soon change thanks to the efforts of campaigners who’ve lobbied for a new model of miscarriage care. The proposed changes would mean after one miscarriage, routine support, including psychological screening, would be available. After two losses, people would be offered a basic set of blood tests for possible causes, as well as having early scans in subsequent pregnancies. And after three miscarriages, a more comprehensive range of investigations would be offered. Currently, a pilot study of this model is underway - though it remains to be seen if the current government will implement its findings.
Of course, even if you are referred for further testing after multiple miscarriages, there’s often no discernible reason or easy answers as to what might help you carry a baby to term – this was the case for me. This absence of an explanation felt like a secondary loss in itself: the hope that there was something doctors could do to help me stay pregnant next time evaporated with the test results.
Indeed, it was only after finding out all my investigations had come back perfectly ‘normal’, that I saw a therapist for the first time, to try to make sense of the unexplainable and the enormous uncertainty around what that meant for our prospects of having a child. Unfortunately, until more research is invested into the causes and treatments for recurrent miscarriage, this is an uncertainty many people will continue to face.
It’s not your fault – and support is out there
While there are some known risk factors that we can have control over, for example smoking or drinking alcohol while pregnant can increase the risk of miscarriage, the majority of the time a pregnancy loss is completely beyond anyone’s control. Sadly, many are caused by a random, unsurvivable chromosomal error – but that does not mean the healthcare system should do nothing at all.
Your grief is valid
Until I had my first miscarriage, I simply hadn’t understood how it is possible to be so undone by the absence of a person who didn’t quite exist yet. Who never took shape in the world. And it took me years to truly come to terms with the fact that what I’d been through was a bereavement. But if very few people know about your pregnancy in the first place, it can be difficult to grieve alone. Without that social reinforcement it can be hard to believe our feelings make sense and are valid. But they are.
That’s why the announcement this week that anyone who has lost a pregnancy before 24 weeks will be able to apply for a certificate of recognition – however long ago that loss was – is so important. Whether or not you want such a document personally, it’s a powerful symbol of how an invisible source of grief can be acknowledged, shared, and written into being.
'Life, Almost: Miscarriage, Misconceptions, and a Search for Answers from the Brink of Motherhood' by Jennie Agg is out now
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