Anybody who has seen the Pixar movie Up will vouch for its ability to reduce grown adults to blubbing wrecks. Among the many seemingly childish but poignant scenes is a flashback to an old man’s early days of marriage, when he – Mr Fredricksen – and his wife, Ellie, dreamt of a family. They lie on the floor and look at the sky. The clouds turn into fluffy babies and we see Ellie’s face light up with delight. She gets pregnant. They happily decorate a nursery. The next scene has Ellie in a doctor’s surgery, head lowered, hearing bad news. The one after sees her sitting alone in the garden, her head held aloft with stoicism, but her eyes shut to the world. Mr Fredricksen watches her from the door, alone in her grief, and finally joins her, presenting her with a vision of an alternative life full of different kinds of adventures, namely Paradise Falls in South America.
When my small daughters watch this scene, they say the same thing in the same sympathetic tone, while still not fully understanding the meaning: “Mummy, she lost her baby, didn’t she?” Two more questions follow: “Mummy, are you crying?” and “Why are you crying?”
“Because she’s sad,” I say, knowing as I say it that “sad” doesn’t come anywhere close.
Miscarriage is the commonest complication of pregnancy. The estimated UK miscarriage rate is 250,000 each year. Doctors believe that roughly 50% of all conceptions never make it to a pregnancy test, and once there is a positive test 15-20% of those miscarry before 12 weeks. Most of them will be classed “sporadic” or “one-off”, caused by chromosomal or genetic abnormalities in the embryo, and will have no bearing on a woman’s future chances of delivering a healthy child. (In order to grow and develop normally, a baby needs a precise number of chromosomes. If there are too few or too many, the pregnancy often ends naturally. This increases with the age of the mother although women of all ages miscarry). Such an explanation rarely helps those suffering. While a minority of women – and men – are able to shrug it off as “for the best” or “a blip” and move on to the next attempt, for the majority there comes a panoply of emotions which range from grief for the lost baby, numbness, emptiness, shock, sadness, anger, bitterness, guilt, fatigue, loss of concentration and, above all, loneliness, even within the healthiest of relationships.
What remains baffling today, in our health-obsessed times, is this: given how common miscarriage is, why is there still such a taboo around it? Women are rarely inclined to reveal they have had one, despite the considerable emotional – and often physical – side-effects.
Any woman who has been through a miscarriage will vouch for how physically dreadful it is, quite apart from the grief. This can be anything from the heavy bleeding to the medical phraseology surrounding the whole sorry business. Unviable embryos are termed “products of conception” or abbreviated to “Pocs”, and often women have to sit in one of the UK’s 200 Early Pregnancy Units reading flimsy, photocopied pamphlets which call for them to make a choice between surgery, pills or leaving nature to “take its own course” in getting rid of what was once the summation of their hopes and dreams. If women are lucky, the process is handled delicately. If they are not, it can be deeply traumatising.
“I decided not to have an operation,” Marie (not her real name) told me after she had started bleeding at 10 and a half weeks and her miscarriage was confirmed. “So the hospital said I was to go on Sunday morning to collect some pills to help ‘expel the products of conception’, a phrase I thought unbelievably ghastly in itself. I arrived and was forced to wait in a dreadful room with perky daytime television on for two hours. They’d lost my notes and had no pills ready. When I finally started crying and asked to see somebody immediately, a doctor came to fill in the paperwork for the pills and under ‘reason’ – he wrote ‘termination’. It was all I could do to tell him that I was not terminating my baby. He was mortified by his mistake, clearly tired and overworked, but I left feeling traumatised. It was dreadful. And then I had to go to work again the next day.”
Miscarriage experts, such as Ruth Bender Atik, national director of the Miscarriage Association, confirm that trauma and emotional distress, compounded by loneliness, affect both men and women: “It hits the headlines when a celebrity has a miscarriage or when there is some new piece of research, otherwise it is not a headline grabber. People aren’t comfortable with it, whether it is the loss, the sadness, the vulnerability, the disappointment, the self-blame. Equally it is difficult on those you are telling. Many women who suffer a miscarriage have not told many people [they are pregnant] anyway, so after the miscarriage, when they are feeling desperate, they are having to ‘tell’ and ‘untell’ in a way. It’s a tough one.
“It’s also difficult on the people being told, because often they don’t know what to say either,” Bender Atik continues. “They don’t know whether to refer to it as a ‘baby’ or a ‘pregnancy’. Added to that, as a nation the British are not good at dealing with grief and tears and death. It’s all cups of tea and brisk walks.”
Louise, a 45-year-old woman who is now 15 weeks pregnant, remembers how desperate she felt after her miscarriage, again at 10 and a half weeks, confirming that the loneliness was the worst of all. “People don’t understand the psychological impact. My partner is eight years younger than me and I kept thinking, ‘If he were with a younger woman, he’d have a child by now.’ I lost confidence in myself and I did feel that not everybody I told understood. I felt less sexual, less womanly, less desirable from all the bleeding. I lost interest in sex for a while. Ultimately it did bring us closer together, but I think my husband had a delayed reaction rather than an immediate one.”
Miscarriage and its impact on men is yet another taboo. Many men feel they have to be “strong” when this is precisely what their partners do not want. Many feel they have to be optimistic. Many withdraw: “One man wrote to me recently to say that he wanted to support his girlfriend but didn’t want her to feel that she had to support him in return,” says Bender Atik. “It is a complicated area. Some couples pull through even stronger than before, others don’t make it.”
The fact that women are now getting pregnant much later – a result of the greater professional and economic opportunities available – is perhaps a contributing factor to more “sporadic” miscarriages experienced by women in their late 30s (fertility and egg quality declines after 37). But there have been other key changes in the past two decades or more that have complicated the process of coping for women. The first is the accuracy and speed of modern pregnancy testing: “In the early 80s, women had to wait until they had missed two periods before they went to their doctor,” Bender Atik confirms. Now, women can test on the day of a missed period. A pregnancy which might have gone undetected and unmourned is now flagged up perhaps too early which, of course, does not make the loss any easier to bear. “We also have assisted fertility now,” she explains, “which is set up precisely to monitor early conception. And only recently, the Miscarriage Association became involved in discussions with an American pharmaceutical company that is planning on introducing pregnancy testing days after ovulation. We worked very hard to convince the company that this was not desirable. Who would it benefit? Certainly not the women. You could argue that women would do all the right things if they knew even earlier, but this creates a problem that makes women think it is their fault, and in most cases of ‘one-off’ miscarriage you can never know for sure why it happens.”
Which brings us to another cultural shift: society’s greater reliance on and increased faith in modern medicine. Paradoxically, given the taboo nature of miscarriage, we expect more of hospitals. We expect to get pregnant when we want and for that pregnancy to go well. And if it looks as though a problem is developing we expect medicine to intervene to correct it. If a miscarriage occurs, we want – even expect – an explanation. We find it hard to live in the medical vacuum that often follows miscarriage. One woman who had suffered a sporadic miscarriage told me that she had convinced herself – wrongly – that she was to blame because she had pushed a heavy trolley around Tesco. More often than not, there is no explanation and – apart from comfort to be taken in statistics – no guarantee that it will not happen again (a woman who has suffered a single sporadic miscarriage has an 80% chance of success next time), a particularly terrifying thought for older women who feel time is ticking away. “We all search for reasons and explanations, but mostly we want to know what we can do to make it go right next time,” says Bender Atik.
PROFESSOR LESLEY REGAN, head of obstetrics and gynaecology at St Mary’s Campus, Imperial College Healthcare, is in the business of trying to find answers. For a small percentage of women, there is a reason for their miscarriage, which only becomes apparent when it keeps on happening.
We meet at the Recurrent Miscarriage Clinic at St Mary’s Hospital, Paddington, now the largest miscarriage clinic in the world. It is designed to help couples all over the UK who have had three or more consecutive miscarriages and women who miscarry after 12 weeks (only 1% of pregnant women). Professor Regan and her team receive 1,000 referrals a year: a hefty proportion of the 6,000 couples who suffer recurrent miscarriage. Recurrent miscarriage affects 1% of all couples trying for a child (although in the US and Europe “recurrent” is extended to two consecutive miscarriages, which means one in 20 couples can request investigation).
Professor Regan has been at the NHS clinic since it started 20 years ago and has built a worldwide reputation for both research and medical breakthroughs. She is now a formidable presence, businesslike and committed to furthering her already renowned research in the field. This morning she has been in the clinic since 8.30am. She darts in and out of her consulting room calling women’s names rather like a headmistress, glasses perched on her nose, slingbacks clicking on the clinic floor, her belted shift and blow-dried hair immaculate.
Of all the women who are investigated at the clinic, half will not have a cause identified even after detailed investigations: “They walk into the clinic wanting an abnormal test result,” Professor Regan confirms. “I have to work hard to convince them that finding nothing wrong is good news. These could be down to chromosomes or age, but it really is better not to find a problem.”
The clinic’s biggest breakthrough has been to identify Primary Antiphospholipid Syndrome (Paps), – or, in layman’s terms, “sticky blood” – which affects 15% of women suffering from recurrent miscarriage and concerns the implantation and effectiveness of the placenta. Careful testing before and during pregnancy, followed by treatment with low-dose aspirin and a low dose of heparin, has raised the live birth rate from as low as 10% in women without treatment to as high as 80%. It has also revealed the link between clotting problems and complications further into a pregnancy: “What was key was identifying that this sticky blood was actually underlying later pregnancy complications, too, so it has opened up a whole field of research. The quality and depth of how the placenta implants is a major factor in how your pregnancy progresses,” explains Professor Regan. A link has also been made between polycystic ovary syndrome and sticky blood.
If 50% of recurrent miscarriages are unexplainable, and 15% are down to sticky blood, the remaining 35% could be down to hormone levels (a trial is ongoing as to the value of taking progesterone), infection, structural abnormalities of the womb – correctable by surgery – “cervical incompetence” or immune disorders. Other groundbreaking projects include the clinic’s laboratory that houses freezers containing 12,000 “trio” genetic samples from mothers, babies and fathers (either blood, chord, placental tissue or “products of conception”) designed to aid future research. There are also four thromboelastogram machines that are used to efficiently identify the speed of a woman’s clot formation.
It is, to put it mildly, a tough clinic to run. Sometimes letters of complaint come in from desperate women dissatisfied with their consultations, and junior doctors and nurses often find themselves traumatised by the visceral anger and aggression of some patients. “You have to expect that,” says Professor Regan. “The reason I don’t walk out at the end of a bad day is the process of helping a woman achieve a child, and seeing her do it. The positive letters I get are extraordinary testimonies to that. I’d say there is one high for every six lows. Some people are incredibly resistant to the truth and I do find myself feeling gloomy, perhaps when there are issues of age or weight, or if there is an underlying problem I just can’t identify, but I have to be tough. For example, last week I was due to see 12 to 15 women. I saw five in the end, which were very late uterine deaths or still-births, and that does wipe you out. But you have to be able to talk to them and they are only going to connect with you if they feel comfortable. I never find myself inclined to say to the women, ‘You should stop trying now’ or ‘It’s never going to work’, because most people reach that point themselves. What is most extraordinary about the women is that they do keep going and we do get successes after a long time of trying. That’s why I don’t give up as leader of the clinic.”
I WAS NOT LOOKING FORWARD to my morning at Professor Regan’s clinic. Whenever I told anybody of my plan, they said “Oh, how awful,” or “How depressing”. And, to a large extent, who can blame them? Who wants to sit for four hours listening to women talk about their miscarriages? It struck me that it was exactly the reason why, as a society, we find it hard to deal with and talk about the subject. It’s easier not to.
Of the nine women I see in Professor Regan’s room, of every social class, all show admirable resilience and courage. The high point comes in the form of 39-year-old Samantha Black and her seven-week-old baby, Summer. Samantha can barely speak for happiness and Professor Regan, albeit in her controlled, professional way, is clearly thrilled by the long-awaited success. The baby is Black’s 10th pregnancy – she has had nine miscarriages and been treated at the clinic for six years for a clotting disorder. “I guess I’m a strong person,” she tells me. “I suppose there aren’t many women who would have gone on as long as I did, but if you want something so badly…” She trails off. “The clinic was fantastic,” says Ian, her husband. “You just take any bit of hope you can – even when we felt like it was always going wrong, that we just couldn’t go through with it again.”
“Well, isn’t that lovely,” says Professor Regan after they leave, putting their notes on a pile.
The corresponding “low” comes in the form of 30-year-old Ella (not her real name) who has fibromyalgia and has had 11 miscarriages in three years, as well as a diagnosis of polycystic ovary syndrome. She has a body mass index of 39.7 – way over what is considered healthy. She is too heavy for a free cycle of IVF on the NHS and not heavy enough for gastric-band surgery: “I think your weight has a lot to do with getting pregnant and staying pregnant,” Professor Regan tells her. “We know now that fat has to be thought of as an organ, and when you are overweight and your BMI is raised, we know that tissue is producing inflammatory chemicals that can have a negative result. You really have to be addressing that.” Her husband explains that she eats like a mouse. Ella says she is in so much pain she can barely walk, let alone exercise to get her weight down. She is taking morphine. The situation seems desperate. When I speak to Ella a week later, she reveals she is on a starvation diet, existing on 300 calories a day. She has already lost 9lb. “I felt awful afterwards,” she says. “I just sobbed. I can’t give up and I will do anything.”
In between these two stories there are others; the 37-year-old GP who has one child already but then had three miscarriages, probably because of low egg quality: “The best way to make your IVF cycle succeed would be to consider donor eggs,” Professor Regan tells her. The GP nods bravely and requests information about clinics in Spain.
The next woman is a 43-year-old who lost her baby at 22 weeks and has been trying to conceive since September. All tests were normal. “Your baby was the right size,” Professor Regan tells her, and then speaks kindly about having her next baby. “You might want to stay with us at our clinic,” she says, “rather than going to the early pregnancy unit where some people can feel a bit lost.” I find myself desperately willing the woman to have another baby.
Then there is a 28-year-old Iranian woman who has been trying for six years and has had four early miscarriages: “My husband is 13 years older than me,” she tells us. “I have been trying to have a baby since three months after we got married.
“It’s very difficult for me,” she adds when Professor Regan pops out of the room, her eyes filling with tears. Just as she leaves, she says, “I’m scared to get pregnant because I don’t want another miscarriage.”
“We need to see you again when there is a positive test,” Professor Regan tells her firmly.
Recalling these stories, the temptation is to feel despair. But, as Professor Regan says, for every six lows, there is a high. Three years ago I recall meeting a woman, Deborah Little, at the christening of a friend’s child. She was pregnant at the time and told me she had had six miscarriages. Six, I remember thinking (this was before I knew many women had double that amount). “And then they found there was something wrong with the shape of my womb,” she told me, “and I had an operation.” With the subject on my mind, I contact her again. She has since had another baby, who is one. Her family is now complete, she tells me happily.
It turns out that she was operated on and treated at the Recurrent Miscarriage Clinic: “What an extraordinary team,” Deborah says, “the lengths they went to… After going through that, you just count all the time… nine, 10, 11, 12 weeks until you’re safe, then the lungs form, then you’re counting until the baby is viable.”
And then comes the point when the counting stops and the baby is full-term. For most, it is healthy. And that, for the mother and for the miscarriage team, is what makes the long journey worthwhile.
• This article was amended on 7 February 2018 for privacy reasons.
