My four miscarriages: why is losing a pregnancy so shrouded in mystery?
I stepped out of Oxford Circus tubeinto mid-morning crowds and cold, bright sunshine. The consultant’s words were still ringing in my ears. “Nothing.” How could the answer be nothing? This was January 2018, six months since my third miscarriage, a symptomless, rather businesslike affair, diagnosed at an early scan. The previous November, I’d undergone a series of investigations into possible reasons why I’d lost this baby and the two before it.
That morning, we had gone to discuss the results at the specialist NHS clinic we’d been referred to after officially joining the one in 100 couples who lose three or more pregnancies. I had barely removed my coat before the doctor started rattling off the things I had tested negative for: antiphospholipid antibodies, lupus anticoagulant, Factor V Leiden, prothrombin gene mutation.
“I know it doesn’t feel like it, but this is good news,” he said, while the hopeful part of me crumpled. We were not going to get a magic wand, a cure, a different-coloured pill to try next time.
Now, my husband, Dan, was back at work and, for reasons I can’t really explain, I had decided to take myself shopping rather than go home after the appointment. I stood staring down the flat, grey frontages of Topshop and NikeTown and willed my feet to unstick themselves from the pavement.
I ended up wandering the beauty hall of one of London’s more famous department stores. I let myself be persuaded to try a new facial, which uses “medical-grade lasers” to evaporate pollution and dead skin cells from pores to “rejuvenate” and “transform” your complexion. Upstairs in the treatment room, the form I was handed asked if I’d had any surgery in the past year. I wrote in tight, cramped letters that six months ago I had an operation to remove the remains of a pregnancy, under general anaesthetic. When I handed the clipboard back to the beautician, she didn’t mention it. I wished that she would.
As I lay back and felt the hot ping of the laser dotting across my forehead, I thought how ridiculous this all was; that this laser-facial is something humans have figured out how to do. How has someone, somewhere, in a lab or the boardroom of a cosmetics conglomerate, conceived of this – a solution to a problem that barely exists – and yet no one can tell me why I can’t carry a baby?
There is no doctor who can reverse a miscarriage. Generally, according to medical literature, once one starts, it cannot be prevented. When I read these words for the first time, three years ago, after Googling “bleeding in early pregnancy”, a few days before what should have been our 12-week scan, I felt cheated. Cheated, because when you’re pregnant you are bombarded with instructions that are supposed to prevent this very thing. No soft cheese for you. No drinking, either. Don’t smoke, limit your caffeine intake, no cleaning out the cat’s litter tray. I had assumed, naively, that this meant we knew how to prevent miscarriage these days, that we understood why it happened and what caused it; that it could be avoided if you followed the rules.
You learn very quickly that the truth is more complicated. After a miscarriage, no medic asks you how much coffee you drank or if you accidentally ate any under-cooked meat. Instead you find that miscarriage is judged to be largely unavoidable. An estimated one in five pregnancies ends in miscarriage, with the majority occurring before the 12-week mark. Seventyone per cent of people who lose a pregnancy aren’t given a reason, according to a 2019 survey by the baby charity Tommy’s. You are told – repeatedly – that it’s “just bad luck”, “just one of those things”, “just nature’s way”.
Just, just, just. A fatalistic shrug of a word. But this is not the whole story. “There is this myth out there that every miscarriage that occurs is because there’s some profound problem with the pregnancy, that there’s nothing that can be done,” says Arri Coomarasamy, a professor of gynaecology and reproductive medicine, and director of the UK’s National Centre for Miscarriage Research, which was set up by Tommy’s in 2016. “Science is trying to unpick that myth.”
Unfortunately, the roots of this myth run deep. It’s an idea reinforced by the social convention that you shouldn’t reveal a pregnancy until after 12 weeks, once the highest risk of miscarriage has passed. It goes unchallenged thanks to age-old squeamishness and shame around women’s bodies, and our collective ineloquence on matters of grief. The bloody, untimely end of a pregnancy sits at the centre of a perfect Venn diagram of things that make us uncomfortable: sex, death and periods.
An impression persists that, while unfortunate, miscarriages are soon forgotten once another baby arrives – that you’ll get there eventually. It’s true that the majority of people who have a miscarriage will go on to have a successful pregnancy when they next conceive (about 80%, one study carried out in the 1980s found). Even among couples who have had three miscarriages in a row, for more than half, the next pregnancy will be successful. Accordingly, the prevailing logic seems to be that not only is miscarriage something that cannot be fixed – it doesn’t need to be fixed. There is little research or funding for trials, and only glancing attention from the healthcare system. What is not being heard, in all this, is that miscarriage matters.
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There is a magical feeling that comes on after a miscarriage, I have found. A semi-delusional state that lasts for days, sometimes weeks, afterwards. After each one of mine (and there have been four now), I’ve caught myself believing I am still pregnant, despite all evidence to the contrary – the trips to A&E, the blood, the still ultrasounds, the forms labelled “sensitive disposal of pregnancy remains”.
It starts in the mornings. For a moment, stuck somewhere between sleeping and waking, I won’t have remembered, and, briefly, I’m still happy. Pregnant. When the phone rings, for a split second I’ll imagine it is the hospital calling to tell me there has been a mistake. A mix-up. They’ve got the results: I am, in fact, still pregnant. Or my husband will say, casually, over dinner, “Oh do you want to hear some good news?” and I’ll think: he’s going to tell me I’m pregnant.
It is the shock, I remind myself, the trauma: it leads to disbelief. Like feeling that the loved one who has died is about to walk through the front door any minute and sit in their favourite chair. This inability to accept reality seems logical to me – inevitable, even – when there is no explanation for what has happened. The brain wants to solve problems, to make meaning.
There are very few specialist miscarriage clinics in the UK. Some people end up being seen by a general gynaecologist or sent to a fertility clinic. Generally, doctors will only agree to look for a possible cause of miscarriages once you have had three in a row. Even after investigations, which in NHS centres tend to look for structural problems with the womb and for blood-clotting disorders, around half of people will never be given a reason for their losses. There aren’t even official guidelines on preventing miscarriage – only on its diagnosis and “management”.
With no answers to your questions – why did it happen? Will it happen again? – you are cut adrift in a sea of recommendations from women on Mumsnet, private doctors, people offering fertility supplements, herbalists and nutritionists, and from cult best-sellers that promise to tell you how to improve the quality of your eggs. It’s been more than 40 years since embryologist Jean Purdy watched as a singlecell embryo in a petri dish divided into two, then four, then eight cells that would become the world’s first IVF baby. Humans have worked out how to intervene in order to create life in a lab, but not how to sustain it in the earliest weeks inside the body. The stage between conception and an ongoing pregnancy, visible on an ultrasound scan (at around six weeks) is sometimes referred to as the “black box” of human development.
According to Prof Nick Macklon, medical director of the London Women’s Clinic and an expert in miscarriage and early pregnancy, the reason there’s been so little progress is that we’ve been asking the wrong questions. “We use the term ‘recurrent miscarriage’ as if it were a medical diagnosis, yet there isn’t one single medical cause,” he said. Some women may have a blood-clotting disorder; for others, a contributing factor could be thyroid dysfunction. Many women who miscarry appear not to have an underlying health condition at all; instead, their bodies seem to be less able to discern what is and isn’t a viable embryo. Yet studies of possible preventative treatments tend to recruit their subjects as if all recurrent miscarriages have the same cause.
This, in Macklon’s view, is likely to explain why several large, quality trials of possible treatments to reduce the chance of miscarriage, such as heparin (a blood thinner) and aspirin, as well as the hormone progesterone, have failed to show any clear benefit, and have subsequently been dismissed by the medical community. Some of these treatments may in fact work for some women, but, Macklon says, “because of the way the study is designed, it comes out as not working overall”.
A related problem lies in the mistaken assumption that most (if not all) miscarriages happen because the pregnancy was doomed to fail. In half of all miscarriages, the embryo will have a serious chromosomal abnormality that means it could never survive, but the other half are believed to be healthy embryos. Prof Siobhan Quenby, a consultant obstetrician at University Hospitals Coventry and Warwickshire, heads up a specialist clinic into recurrent miscarriage, one of four centres that form Tommy’s National Centre for Miscarriage Research. The key question, she believes, is establishing whether someone is repeatedly losing chromosomally normal or abnormal pregnancies. “Everyone from their third miscarriage onwards should have their miscarriage tissue tested genetically,” she said.
Yet access to genetic testing is patchy. Not all NHS hospitals can do this kind of testing on site. If someone miscarries at home, the onus is on them to collect a clean sample of the tissue and take it to their hospital within 24 hours. This may not be something they can do – or even know about.
Quenby is a celebrity in the world of recurrent miscarriage patients. Her name often crops up in the “miracle baby” stories that make the papers, with headlines such as “Baby joy for couple who lost 13 babies to miscarriages”. Her particular area of interest is how the lining of the womb behaves in early pregnancy – and how it might contribute to miscarriage. She is one of the authors of a study published in January 2020, which found that a repurposed diabetes drug, sitagliptin, could reduce the risk of miscarriage by boosting the number of stem cells in the womb lining. These cells are responsible for renewing the lining and reducing inflammation. “It’s still only a small pilot trial, but it is fantastically exciting,” Quenby told me. “It’s the first time in a long time that there’s been a potential new drug treatment.”
Quenby is convinced it’s not so much the treatment options that are lacking, but the will to try them. “It’s the opposite of ‘we can’t do anything’,” she said. “There are tons of things we can