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My Four Miscarriages: Why Is Losing a Pregnancy so Shrouded in Mystery?

After losing four pregnancies, Jennie Agg set out to unravel the science of miscarriage. Then, a few months in, she found out she was pregnant again – just as the coronavirus pandemic hit.

The Guardian

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I stepped out of Oxford Circus tube into 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. Seventy-one 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.

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 single-cell 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 try now.” Still, as a miscarriage patient, you run up against the dilemma that recurrent miscarriage is not a diagnosis in itself, so the difficulty is in establishing which treatment is most appropriate to you. Even with the help of the most motivated of doctors, there is going to be a degree of trial and error.

Many people will be told, as we were, that the best treatment is no treatment – simply try again. This is what we did, only to miscarry for a fourth time. We were under the supervision of the recurrent-miscarriage clinic, yet even after that fourth loss, the prescription remained the same: just keep trying.

It took us a year before we felt ready to roll the dice again. Shortly after I started researching this piece, in November, I found out I was pregnant for the fifth time.

To be pregnant again after previous miscarriages is to live at the fork of two alternative lives. You try to think as little as possible about what’s going on inside your body, while, of course, thinking about it all the time. Alive or dead? Baby or miscarriage? In every possible scenario, you plan for the two outcomes. To a certain extent, you are forced to buy into both possibilities simultaneously. You cannot truly believe it will work out, but you have to proceed as though you are pregnant anyway, until a scan proves otherwise. Alive and dead. Schrödinger’s foetus.

You treat yourself as your own walking research study: a sample of one. Perhaps you take a different brand of prenatal vitamin. Or you do different exercise. You do no exercise at all. You drink less caffeine. You drink no caffeine at all. You are more careful. You are less careful, because you’ve been unimpeachably careful before and look where it got you. Mostly, though, you just wait.

Why hasn’t miscarriage medicine moved faster or farther? Why isn’t there more certainty about what works and what doesn’t? The first detailed depictions of a human embryo’s development, from three weeks to four months, were produced by the German anatomist Samuel Thomas Soemmerring in 1799, and the images are remarkably similar to graphics used in week-by-week pregnancy apps today. Yet a precise schema of measurements to date the stages of early pregnancy – between seven and 16 weeks – wasn’t established in modern clinical practice until 1973, with the advent of ultrasound imaging. We had put a man on the moon before we could routinely see, in real time, what was happening inside a woman’s womb.

Pregnancy research, in general, is underfunded. A recent research review, published in January 2020, found that for every £1 spent on pregnancy care in the NHS, less than 1p is spent on pregnancy research. “Compared to other areas – such as infertility – miscarriage has certainly lagged behind,” said Arri Coomarasamy, who sees patients in both fields.

“Miscarriage gets a bad deal,” agreed Hassan Shehata, a consultant obstetrician and gynaecologist, who runs the Centre for Reproductive Immunology and Pregnancy, in Epsom, Surrey. “For a start, there is no specialist training,” he said. When you train as a gynaecologist, you can specialise in sub-fields such as infertility and IVF, but there is no specific speciality in miscarriage, he explained.

There are also practical difficulties to conducting studies. “Pregnancy is difficult to research as, by its nature, studying it might disrupt it,” Nick Macklon told me. This means you’re often left with retrospective population data (easily skewed by multiple factors), or studying donated embryo or foetal tissue (tightly restricted for ethical reasons – and prohibited altogether by “personhood” laws in some parts of the US, which insist on burial or cremation of all pregnancy tissue).

Even when human trials of treatments are feasible, there is the challenge of persuading women who are desperate to avoid another miscarriage to sign up to a study in which they might be given the placebo. As Ippokratis Sarris, a consultant in reproductive medicine and director of King’s Fertility, a private fertility clinic in London, put it: “It’s very difficult to do a proper trial – people want to take something they think might work. How do you tell them they can’t have it until there is good evidence?”

Now that I was pregnant again, there was one treatment I was desperate to try. Progesterone has long been the great hope of miscarriage research. This “pro-gestation” hormone is produced in higher quantities during pregnancy by a woman’s ovaries (and, later on, by the placenta). It is essential throughout pregnancy and helps prepare the womb lining, although scientists don’t yet understand the precise mechanisms by which it does this. In May 2019, a large, multi-centre trial of progesterone, given in early pregnancy – the Prism trial – found that for women with a history of recurrent miscarriage who had started bleeding during their next pregnancy, taking progesterone made a significant difference to the live birth rate, compared with a placebo.

I was prepared to argue the toss for progesterone with my doctors this time around. I knew the new evidence didn’t perfectly fit our circumstances. I wasn’t bleeding in this pregnancy, for one thing. To my surprise, the female doctor we saw at the clinic for our first appointment, in the first month of this pregnancy, agreed to prescribe it without so much as a raised eyebrow. It was not the first time I have asked about some speculative treatment, but it was the first time the clinic had agreed.

As Dan and I joined the queue at the hospital pharmacy, tucked away in a grimy building in Paddington, I felt I was holding on to something bigger than the printed prescription in my hand. For the first time, we had something, after being told that there was nothing.

Then less than a week later, at eight weeks pregnant, I started to bleed.

There are therapies for miscarriage that have been available privately for well over a decade, yet are no closer to becoming mainstream medicine or available on the NHS. Where questions remain over the evidence, private clinics can go ahead and offer treatment anyway – something the NHS cannot do.

One therapy available at a handful of private clinics – lymphocyte immunisation therapy (LIT), in which a woman is given a transfusion of white blood cells from their male partner before she becomes pregnant – has been banned in the US, outside of a research setting. Such treatments belong to a field known as reproductive immunology, and stem from work in the 80s and 90s by an American obstetrician, Alan Beer, who once summed up his theory in the following way: “Effectively, women become serial killers of their own babies.”

The idea is that miscarriage can be caused by a hyper-vigilant immune system that misrecognises the symptoms of pregnancy as a threat. In these cases, treatment may involve suppressing the immune system using steroids or intralipids (essentially an emulsion of soybean oil and egg yolk, given intravenously, sometimes referred to as the “mayonnaise” or “egg-yolk” drip). Clinics charge up to £50,000 for such treatments. However, all but one of the experts I spoke to expressed scepticism about their effectiveness.

Funding high-quality trials is particularly difficult when it comes to treatments that target the immune system, because, according to Quenby, in the past there has been a tendency to over-hype the results.

Quenby believes our understanding of miscarriage would improve if we considered it as a public health issue, as we do stillbirth and neonatal deaths. Both of these are more common where there are high levels of social deprivation, and it’s likely the same is true of miscarriage rates, too. Though, currently, hospital trusts are not required to report the rate in their area.

But like periods, female pain, the menopause and conditions such as endometriosis, which also want for good research and understanding, it’s hard not to conclude that miscarriage suffers from a lack of knowledge and interest because it happens to female bodies. What’s more, the underlying assumption tends to be that miscarriage is always down to something a woman’s body is or isn’t doing.

In 2019, researchers at Imperial College London found that partners of women who have had three or more miscarriages tend to have higher levels of damage to their sperm’s DNA. The trial was small, comparing the sperm of 50 men whose partners had had miscarriages with 60 men whose partners had not. The results will need to be replicated. And before any possible treatments can be trialled, researchers need to establish what causes such DNA damage.

Still, Quenby said, “The fact that we’re even looking at it is really important.” Traditionally, men and their contribution to the pregnancy have been largely left out of the picture. In the past three years, while I have been scanned and probed and pricked for multiple phials of blood, aside from completing a form outlining his basic medical history when we were referred to the recurrent-miscarriage clinic, Dan has not been required to so much as cough and say “ah”.

When I discovered I was bleeding, I did a desperate search online for answers. I decided I was either having my fifth miscarriage – or, just possibly, the intermittent, brownish spotting was a side effect of the progesterone. I knew I should phone the recurrent miscarriage clinic, or my GP, or try to get an appointment for a scan at my nearest early pregnancy unit. But I couldn’t bear to. I was not ready to talk practicalities just yet, and there was no one at the clinic to call for the sake of talking. Besides, we were due to go back for a scan the following week.

In the following days, the bleeding didn’t stop, but it didn’t get worse, either. Even so, I couldn’t shake the thought that, at eight weeks pregnant, this was the exact same point I had miscarried the last three times. Dan and I made our contingencies. It was early December, and we were due to move house in a few days, and we discussed how we would fit surgery around the move, if it turned out to be bad news. I bought sanitary pads and wine. We pretended we were sanguine. We pretended we knew how we would cope. “We’re pros now,” we joked. I barely slept the night before the appointment.

On 4 December, my mum came with us to the hospital and managed to keep up a steady patter about her cycling, her knitting and the roadworks on the A14 while we waited. I knew she wanted to distract me. But the only words my brain had space for were the ones I was convinced I was about to hear for a fifth time: I’m so sorry there is no heartbeat. I’m so sorry there is no heartbeat.

When we were finally called in for the scan, I explained to the sonographer that I was anxious. That I’d been bleeding. I tried not to look at the print on the wall of the room – the same room we were in last time – of a red heart, printed in swirly faux-brushstrokes. I tried not to think what I thought last time: how fucking inappropriate that is. A heart, for when there is no heartbeat.

I lay down on the bed and unbuttoned my jeans. Dan held my hand. I was braced for the words: So sorry. So sorry. Except they didn’t come. The sonographer was telling us that everything looked fine. She turned the screen towards us, and she was pointing out the flickering heartbeat. She was telling us that I was measuring in at nine weeks and one day. The baby was moving. And I was crying.

Did I dare to believe that the progesterone was actually working? The possibility loomed in my mind that our miscarriages really had been “just” bad luck all along. At least one of our losses was down to a chromosomal abnormality known as a triploidy: essentially an extra set of chromosomes. One cause of this is an egg being fertilised by two sperm at once – as random and unavoidable as that.

About two weeks after it started, the bleeding waned and our clinic suggested it was time we transferred to our local hospital for antenatal care and the 12-week dating scan. (This is normally the first scan people have on the NHS, at the end of the first trimester, and it’s used to check the foetus’s health and estimate the due date.) On the one hand, this felt like an achievement – we had never made it this far before – but on the other, it meant leaving the relative security of the specialist clinic, where everyone understands why you don’t want to think further ahead than the next appointment.

Feeling like fledglings pushed from the nest, we had to brave the official NHS booking-in appointment, which involved giving our medical histories to the local midwifery team and some routine screening tests. We have done this twice before, during previous pregnancies, when we knew and worried less. Two days after the second one, I bled out the tiny embryo on our bed at home. I hadn’t dared make this particular appointment since.

We got our all-important appointment for the dating scan, a little over two weeks away – delayed slightly by the Christmas break. Time passed twitchily. We congratulated ourselves for not miscarrying on Christmas Eve, on Christmas Day, on Boxing Day.

On 30 December, six hours before the scan, I read a note from the hospital that said you have to pay £5 for a copy of the scan photo. Fleetingly, I debated getting some cash out, but decided this would be jinxing things. At the hospital, I squeaked my name to the receptionist. We were early. This may have been our 12-week scan, but it had taken us 48 weeks of pregnancy to get here. I really wasn’t sure if I could wait another 20 minutes.

I had my spiel prepared for the sonographer – “a bit anxious” … “four miscarriages”.

“Thank you for telling me,” she said, as I lay down. There was the briefest of pauses. “OK, here’s your baby.”

Whereas in previous pregnancies there had only been cavernous blackness on the ultrasound monitor, now there was wobbling movement; the grey outline of a head and a tiny, round tummy – a waving, wondrous sea creature emerging from the dark.

“They’re a wriggler,” the sonographer told us, smiling. I gripped Dan’s hand and we watched as the baby – I will try to call it a baby from now on – somersaulted for us. For the first time, we left an antenatal unit with a scan photo and stepped out into entirely new territory.

On 14 March, we hit 24 weeks, which is deemed the point of “viability” – that is, when a foetus is theoretically capable of surviving outside the womb. Whatever was going to happen to us from now on, it would not be classified as a miscarriage. Keeping this baby alive would no longer be down to my body alone. Should anything happen, doctors would have to at least try to intervene. These were not comforting thoughts exactly, but they were something.

Ten days later, the whole of the UK went into coronavirus lockdown. The weekend we had quietly celebrated reaching viability also turned out to be the last weekend I would see anyone but my husband or a healthcare professional for a long time.

The initial days of confinement were softened by activity and preparation: batch-cooking, arranging deliveries, cancelling plans. I comforted myself by reading the official Covid-19 guidance from the Royal College of Obstetricians and Gynaecologists over and over: “There is no evidence to suggest an increased risk of miscarriage … Pregnant women are still no more likely to contract coronavirus than the general population.”

Slowly, though, as I watched the number of reported cases and deaths rise, marooned on the sofa at home, fear seeped under the door. Not a day has gone by, since finding out I was pregnant again, that I have not worried that my baby might die. But now, during a global pandemic, those nebulous anxieties hardened into something nameable. The shadow on the nursery wall had taken a solid shape.

I woke up one night in the first week of lockdown feeling hot, my throat tight. This is it, I thought – I’ve caught it. I had barely been outside for a fortnight, though I did get my hair cut a few days before lockdown was declared. And so the taunt went round and around in my head, as I stared at the ceiling unable to sleep: your baby could die, and all for the sake of your split ends. In the rational light of day (and feeling fine), I concluded it had probably been heartburn.

The world shrank. I baked bread and planted herbs. I silenced notifications and deleted social media accounts from my phone. I tracked my daily steps and counted my baby’s kicks using an app. Mixed in with the fear and stress of uncertainty, there was also a guilty kind of sadness for the things I would not get to do – things I had dreamed of for so long: a “last” holiday as a couple, showing off my bump in my first maternity dress, meeting new “mum friends” for coffee.

People phoned to ask how we were coping, but it felt selfish to admit to such small sadnesses, when there were bigger worries: for my brother, who had to postpone his wedding; for my cousin, who is a nurse; for our four grandmothers, who all live alone. Then there were the worries of people I don’t know, but who could so easily have been us: those who have had their fertility treatment cancelled, or who will be told they have miscarried during scan appointments they have had to attend alone, in order to protect other patients and NHS staff. At the time of writing, hospitals were being advised not to offer extra scans in early pregnancy, even for people with a history of miscarriages.

On 17 April, week four of lockdown, I attended an appointment for a 28-week routine growth scan by myself, while Dan, following the new rules, waited in the car. A security guard at the door checked my name off a list. The sonographer and midwife I saw wore masks and visors, while the doctor conducted my appointment from the opposite end of the consulting room. I projected my voice, like a bad stage actor: “No, no family history of diabetes”, and so on.

On some days, it has felt as though the pandemic has brought my experience of pregnancy closer to the curve of normality. For so long, I had felt as if I was only playing at pregnancy, like a small girl with a cushion up her jumper. I couldn’t trust that I would get to do things other pregnant women take for granted. But then, suddenly, no one else was going to antenatal classes, throwing baby showers or browsing department stores for the perfect pram either.

The temptation, when you get to where we are now, still pregnant after so many losses – and in the shadow of loss on a global scale – is to start talking about miracles. But I don’t believe in miracle babies any more. I believe we should be able to put our faith in the evidence, in knowledge of how our bodies work – or don’t work. That waiting and hoping isn’t enough. Even so, as I sit here, in my fifth pregnancy, in the third trimester, wearing my very first pair of maternity jeans, feeling our baby kick inside me, it is hard not to consider it a wonder that any of us gets to be here at all. Especially when there is still so much we don’t know.

Jennie Agg is a freelance journalist specialising in women’s health.

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This post originally appeared on The Guardian and was published May 5, 2020. This article is republished here with permission.

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