Pregnancy Loss: Surviving Miscarriage and Stillbirth

By Zoe Taylor

A book on pregnancy loss, dispelling the myths about miscarriage and stillbirth.
'Invaluable for those dealing with pregnancy loss - medically and emotionally' Dr Devora Lieberman, MD, MPH, FRANZCOG, gynaecologist and fertility specialist When a pregnancy fails, grieving parents often wonder why no one mentioned it could happen. Yet one in every four women will experience miscarriage or stillbirth. Mother of two and health writer Zoe taylor has survived repeated pregnancy losses. In this book, she shines a light on every aspect of this topic: • the experience of pregnancy loss and the desire for answers • 
What experts know about causes and risk factors, and new 
areas of research • 
Strategies for facing a world that poorly 
understands pregnancy loss • trying again • Pregnancy after a loss • Deciding to stop trying • tips on how to support people going through pregnancy loss PREGNANCY LOSS: SURVIVING MISCARRIAGE AND StILLBIRtH is a book of courage, hope and survival. It will help all people touched by loss, including parents, partners, friends, family, researchers, doctors and carers.

• Language: English
• Publisher: HarperCollins Publishers Australia
• Release date: Feb 1, 2010
• ISBN: 9780730445432

Zoe Taylor

Zoe Taylor is a UK-trained journalist with over ten years' experience as a health writer. She was Health Reporter for the London Evening Standard then joined the Daily Telegraph, where she writes the popular weekly column Mum’s Word . She lives near Sydney with her husband and two children. This is her first book.

Book preview

Introduction

How do you find ways to describe what it’s like when a baby dies during pregnancy? Sometimes even the most carefully chosen words are not enough. Try devastation, incomprehension, gut-wrenching sadness. There might be feelings of failure, anger and frustration. There can be disbelief, denial and sheer horror. Then the struggle begins to try to understand how this could possibly have taken place. Why did it happen to you? Was it your fault? How can you make sense of it?

The chances are that before you experienced it yourself, you had never spoken in detail to someone who had gone through pregnancy loss and had never dared to contemplate that it might happen to you. Without realising it, almost certainly you will have rubbed shoulders with people who have suffered a loss; it’s just that they never confided in you.

Thumb through any pregnancy book and you might find a page on miscarriage, usually detailing the warning signs. Stillbirth rarely even rates a mention. Mother and baby magazines offer a huge amount of advice—from what to pack in your hospital bag, to nursery design and labour plans. But few have the courage to tackle the reality that not all pregnancies are successful. Antenatal classes, by their very nature, are about trying to help prospective parents understand great unknowns, but there appears to be a reluctance to consider unhappy endings.

These are some of the reasons why pregnancy loss often takes you to a very lonely place. As you begin the often fruitless search for answers, logic and sense, it can feel as if nobody can fully understand your pain—not even your partner. You might despair and feel that very few people will have any idea what it is like to walk in your shoes. And while you may wish that nobody else should ever go through a similar experience, you might also crave the comfort that comes from knowing you are not entirely alone.

The reality is that pregnancy loss is much more common than many people imagine. One in four women experience pregnancy loss of some kind. A large proportion of pregnancies—about six out of 10—are lost without the women even realising they have conceived. A further 10 to 15 per cent will fail later during the pregnancy. While the chances of a pregnancy failing fall to only about 2 per cent after the first trimester, the number of babies being stillborn is surprisingly high: about seven in every 1000 babies.

Every day, about six babies will be stillborn in Australia and New Zealand, and there are about 55,000 miscarriages every year in Australia. Survival rates of babies during their first 28 days of life have vastly improved, and ‘miracle’ babies who survive despite being born sometimes little over halfway through a pregnancy are regularly celebrated in the media.

What tends to compound the grief of parents struggling to come to terms with the death of an unborn baby is that while pregnancy loss is not unusual, it is poorly understood. Medical professionals are frequently unable to offer an explanation, and friends and family are at a loss as to what to say. All too often this results in even more loneliness, frustration and desperation.

But there are invisible ties that bond those who have been personally touched by pregnancy loss—a simple ‘sorry’ from someone who can truly imagine your pain can mean so much. And couples do find comfort in unexpected places. Also, there is some real momentum towards educating the public about pregnancy loss and lobbying for more research into its causes. I hope Pregnancy Loss: Surviving Miscarriage and Stillbirth will contribute to that.

There are taboos around pregnancy loss that we need to break down. While researching this book, it became clear to me that the generation of women who are now grandmothers were often expected to cope with miscarriage and stillbirth with little support. Failed pregnancies were not discussed. In fact, it was quite common for women who experienced pregnancy loss to find out years later that something similar had happened to a relative—even their own mother—but it had never been mentioned.

This is by no means to suggest that women were left untouched by these tragedies—quite the contrary. I have encountered women who are still struggling with their feelings decades later, but have been unable to voice their emotions.

To borrow the words of mother and writer Jayne Kearny, parents who have lost a baby during pregnancy become ‘members of a club’. It is a club we wish we did not belong to. It can be a secretive club, and there are times when we have no idea how we should behave, either alone or with other members. One woman explained to me how she is able to identify other members of the club, without having toask—once she admits to being a member she can simply ‘see it in their faces’. Words are not always necessary.

Some of us feel guilty and ashamed to be a member. Some of us want to wear our club colours with pride, to shout about it, stop people in the street and tell them that it exists. Many of us have some days when we wish we hadn’t had to join and others when we feel strong enough to see some benefits.

It is a club we wish nobody else would ever have to join, but one where it can be a relief to be surprised by a familiar face.

We have all followed our own paths and paid different prices for our membership. We can never walk in each other’s shoes. But we are comfortable with each other. Not because hearing of someone else’s pain eases our own—often it is quite the opposite. Not because we enjoy the exclusive nature of this club, but there is comfort in knowing there are so many other members, even if we have only met one or two.

It is important, however, to recognise that every experience of pregnancy loss is unique. My research has underlined the fact that even when faced with what appear to be very similar circumstances, our reactions and strategies for coping are very varied. There are as many takes on this subject as there are babies we have lost. There are no rights and wrongs here. But, like all types of grief, it is very personal—a point which many contributors to this book wish to emphasise to family and friends as they work their own way through their grief.

Throughout the research and writing of this book I have tried to never make assumptions and to be as sensitive as possible. I have tried not to make generalisations. My own experience of recurrent miscarriage inspired me to put pen to paper, but this book is not my story. It is a collection of voices and unique perspectives.

This book does not pretend to answer all your questions about why your baby died. But it will recognise the importance of those questions. It will not tell you how to grieve, but it will acknowledge your need to grieve. It will go some way to quenching the thirst for statistics and explanations of known causes of pregnancy loss and look at where research might take that quest in the future.

For those who have suffered pregnancy loss, I hope this book will reassure you that there are people who understand and are willing to share their pain, their hopes and dreams and their survival tips. But I also hope it will provide insight for health professionals, partners, friends and relatives of survivors into the complex emotional toll of pregnancy loss.

Some definitions: in medical terms, any loss after 20 weeks’ gestation is classified as a stillbirth. I have interviewed women who have had a late miscarriage at 18 or 19 weeks and others who have had a stillborn baby at 20 weeks. For some, the distinction between the two is a very important one.

Many women who miscarry do so in the first trimester. Many women who have a stillborn baby give birth approaching or past term. The physical experience of pregnancy loss varies hugely, as does its emotional impact.

In some instances in this book, miscarriage and stillbirth will be dealt with separately. But some issues and emotions can be common to all types of pregnancy loss. While health professionals often refer to a developing baby as an embryo and then a fetus, here they will be acknowledged and referred to as babies.

Scattered throughout Pregnancy Loss: Surviving Miscarriage and Stillbirth are extracts of personal stories. In many cases these contributors have spoken candidly—and in detail—as they have never done before. They have taken the opportunity to share thoughts and feelings that are often too raw to express even to those closest to them. Some of the stories told here may be confronting and be an emotional read for some people.

Also included are stories of inspiring courage and reminders that the majority of women who experience pregnancy loss will have a successful pregnancy in the future.

It is all too common for those who experience pregnancy loss to feel their grief is not acknowledged. It is recognised on these pages. And my aim is that this book will give others pause for thought and persuade them that even clumsily articulated words of comfort are better than none at all.

I would love you to see this book as something of an old friend

—a friend that you may not always agree with and may not want to talk to all the time, but one that will always be there. The kind of old friend who knows a little of what you have faced, who does not promise to answer impossible questions, but helps you to think things through and feel less alone. The kind of friend whose views may be a little confronting but who, nevertheless, you would gladly introduce to your family and friends.

And like words from an old friend, please bear in mind that the information in this book is not a substitute for expert medical opinion.

PART1

EXPERIENCING AND MAKING SENSE OF PREGNANCY LOSS

1

My journey—becoming a statistic

As far back as I can remember, I never doubted that I would be a mother. Perhaps that’s partly why, in my mid-twenties, I had a simplistic view of starting a family. Like many women, I had a figure in my head for the number of children I wanted. My number was four. I’d spent the best part of a decade heeding my mother’s advice about avoiding an unwanted pregnancy. Despite having a career, I was not afraid to tell people that I thought I should start my family when I was 28. I was young and I was naïve.

Certainly, I never would have predicted the twists and turns fate would throw my way during my quest for parenthood. Because I was a health reporter, I knew that difficulties having a family were not uncommon. But if I had unspoken fears that my dreams might not be realised, they were associated with infertility, not pregnancy loss.

My story is not a particularly unusual one, and I share it here, not in search of pity or sympathy, but because it is inextricably linked with the inspiration for this book. Without my losses, I would never have written this book. And without this book, my recovery would have taken a very different path.

Some people find consolation in thinking that everything happens for a reason. In the absence of faith or medical explanations, I am content to speculate that writing this book was how my story was supposed to end. And if recording my own experience, and more importantly those of the brave and inspirational women you will find within these pages, eases the pain of others as they navigate similar journeys, we can all share in that comfort.

My story started a little later than I had anticipated. My twenties came and went. During my work I regularly wrote about the ticking of biological clocks and the highs and lows of fertility treatment, quietly hoping I would not get to experience them firsthand.

A few weeks shy of my 31st birthday, I thought I could finally lay any such doubts to rest. I was pregnant. In my mind, I have re-lived the moment the little pink line confirmed my suspicions many times

—partly in an effort to preserve it. I try to recall the rush of pure excitement; the feelings of elation, anticipation and trepidation; of wondering at the miracle of life and realising my world would never be the same again. That was just within the first few hours. It was a feeling that would only last a few days. I would never experience it again.

About to head overseas for a family wedding, and at about five weeks pregnant, I made an appointment with a GP. The morning of the appointment, for some reason that I still cannot explain, I took the second pregnancy test from the box and peed on the stick. A pink line appeared, but it was fainter than it had been the week before.

When I mentioned the second test to the locum GP I saw, she bluntly told me it was likely the pregnancy was not viable, adding that miscarriage was very common and that there was nothing I could do but ‘wait and see’ what happened.

My husband and I flew out of Sydney the next day. Packed in my hand luggage were precautionary sanitary towels and a couple more pregnancy tests. We used the tests in a San Francisco hotel room, but had no idea how to interpret the results, which still showed signs of the pregnancy hormone beta hCG. I began spotting in a plane to England two days later. I arrived at my parents’ home and, instead of telling them I was pregnant, I had to call my mum at work and ask her to take me to hospital.

My first pregnancy was over almost as soon as it had begun. I had become a statistic that I had often quoted before—the one in four of women who experience pregnancy loss. The following day, we attended a family wedding. Life went on, but for me it proceeded in a bit of a blur. At times, I was able to be philosophical—I had proved I could get pregnant, I had to accept that this life was not meant to be. But I was equally furious at the unfairness of it and I was totally unprepared for the deep, deep sadness which would sneak up and crash over me in waves.

It was when I began to confide in relatives and a few close friends that the reality of how common pregnancy loss is began to dawn on me; and that it was something rarely discussed. Almost everyone I spoke to knew someone who had lost a pregnancy. But they had never mentioned it before, and while it was reassuring to feel my partner and I were not alone, I began to sense almost a conspiracy of silence. I also got my first taste of guilt and self-blame. I knew I had done nothing to contribute to this pregnancy failing, but doubts and guilt snuck in.

By the time we arrived back in Sydney a month later, I was pregnant again. While I managed to remain optimistic, I realised immediately that I would never recapture the innocent excitement of my first pregnancy. My GP tried to reassure me. ‘Let’s hope you’ve had your one-in-four,’ she said. I knew she had statistics on her side—only around one in a hundred couples suffer recurrent losses.

As the pregnancy progressed, I began to believe she was right. I was lucky to enjoy a problem-free pregnancy. My daughter was born at 39 weeks’ gestation. I was 32, I was a mum and I was ecstatic.

However, a few weeks before the birth of my daughter, I had been haunted by feelings of sadness as the due date of my first baby came and went. I had still not confided in very many people about the miscarriage, and it felt a bit like a guilty secret. On my bookshelf with the spine facing inwards—in case the title betrayed my secret to visitors—sat a book on miscarriage by Professor Lesley Regan, whom I had interviewed many years before about running the largest miscarriage management clinic in Europe at London’s St Mary’s Hospital.

But I was uncomfortable with my silence. As a health journalist, I had spent the best part of a decade persuading people to reveal intimate details of their personal medical histories. Often they were motivated by a desire to help others by raising awareness or as a way of thanking the medical professionals who had helped them. In the end, the driver for me to share my story was anger. I was angry with myself for keeping the secret. But there was something else.

I was furious to discover that some Australian politicians were using figures which included miscarriages and stillbirths in a debate about late-term abortions. Politicians—among them the then federal health minister Tony Abbott—were claiming that there were about 91,000 ‘terminations’ a year, 2 per cent of which were classified as late-term. Because of the way statistics are collected in Australia, that figure incorporated an unknown number of women who needed a D&C (Dilatation and Curettage) following a miscarriage, or had had an ectopic pregnancy or a stillborn baby. The assumption being made was that the statistics were a reflection of the number of women choosing to end a pregnancy. In fact, it is impossible to distinguish those women who experienced some kind of pregnancy loss or who decided to induce labour due to life-threatening medical problems with the baby or mother.

Three weeks after my daughter was born, this phony debate about late terminations—there were even suggestions that older women were having abortions as a form of contraception—made me angry. And if it made me angry, I could only imagine the effect on couples whose babies had been stillborn or on those who had taken the agonising decision to end a pregnancy for medical reasons.

My confidence buoyed by having become a parent, I turned the book around on my shelf and wrote a column for Sydney’s The Daily Telegraph, sharing my secret and venting my anger on behalf of women whose pain prevented them from speaking up. It was the first time I had written such a personal column and I will never regret it. It was the first of many articles I would write about pregnancy loss—ultimately culminating in this book. But my personal journey of loss had not yet run its course.

When I fell pregnant for the third time, just before my daughter’s first birthday, my GP repeated her reassurances. After all, not only had I already had my ‘one-in-four’, but I had also proven I could carry a healthy baby to term. When I got to eight weeks, I knew the statistics were stacking up in my favour—with the risk of miscarriage falling from 15 to 5 per cent. At 12 weeks, I was confident enough to tell a few friends. At 13 weeks, a routine ultrasound revealed my baby had died.

After my first miscarriage, I had taken some comfort in the fact the loss had occurred early. This time, I felt much more like I had lost a baby, rather than a pregnancy. Medical technology meant I knew the exact measurements of my baby. I can be pretty sure it survived past 10 weeks. I saw it on a monitor, looking perfectly formed with its little hands curled up by its face. And I needed a medical procedure to remove my baby from my body. My ever-increasing thirst for statistics meant I knew only 10 to 20 per cent of miscarriages were so-called ‘missed abortions’, where there are no outward signs that the pregnancy has failed. Later, I would get more and more used to being on the wrong side of apparently promising statistics. When you repeatedly find yourself in the small percentage of those for whom the outcome is negative, statistics begin to ring hollow.

As I witnessed friends’ problem-free pregnancies progressing, it was difficult to avoid repeatedly asking, ‘Why me?’ But I reminded myself that many women go through far greater loss and trauma and get up each day and get on with life. And, of course, I had my daughter. I was incredibly fortunate.

I was also very lucky not to suffer the fertility problems I had once feared and three months later I was pregnant again. When I had some spotting at six weeks, I received conflicting medical advice (something I now understand is a frustration of many women who experience pregnancy loss). My GP told me to put my feet up and try to get some rest—even though I had an 18-month-old toddler! Meanwhile, an obstetrician who was also a friend was decidedly blunt. ‘If the pregnancy is going to stick, it will stick,’ he said. The appeal of the GP’s advice was its illusion of control. I could not bring myself to avoid her advice completely and did try to slow down.

At eight weeks I began to bleed and ended up in an emergency department. I went for an ultrasound the next day, trying to prepare myself for the worst. I saw a tiny heartbeat, but there was an area of unexplained bleeding. My obstetrician friend told me my chances of this baby surviving were about six out of 10. Although my love affair with statistics was now under a bit of a strain, I also knew that some studies had shown that 98 per cent of pregnancies among women with a history of losses were successful once a heartbeat had been detected.

There were no more signs of problems for the next four weeks. I was constantly wondering if I still ‘felt’ pregnant. Two close friends from my mothers’ group were expecting babies within days of mine. I was desperate for this baby to survive and found it difficult to contemplate that we would have yet more ‘bad luck’.

The day of the 12-week scan came around. My level of optimism when we went back to the same radiology clinic where we had discovered our last baby had died still surprises me. This time, I knew as soon as I saw my baby on the monitor that it had not made it. I also realised immediately that I had become another statistic—now officially suffering recurrent miscarriage. And my third miscarriage meant it was time to investigate.

A few weeks later I was dealt what felt like another unfair blow. Tests on the baby revealed an explanation for this miscarriage (the first to be investigated): it had been a partial mole pregnancy. My feelings that my body had failed me and I had let everyone else down were intensified on learning the baby had never had a chance of survival, due to an error in the way the egg behaved at conception. In the simplest of terms, the egg had been fertilised by two sperm, resulting in a baby with 69 chromosomes instead of 46 (three sets instead of two). I was advised not to risk getting pregnant again for a year. In the meantime, I had to have regular tests to measure my beta hCG levels, as an increase would be an indication of regrowth of placenta. There was a very small risk of developing a rare form of cancer after a molar pregnancy.

We quickly embarked on detailed investigations to search for any underlying causes for the two previous miscarriages. I craved answers or explanations. The specialist I saw tried to reassure me that the best result would be to find nothing wrong. Subsequently, as with more than 50 per cent of couples suffering recurrent miscarriage, no cause was detected. This should have been a green light to try again, but the complication of the third miscarriage meant we had to wait.

The emotional impact of my journey at this point was extraordinarily difficult to explain to friends. One woman I interviewed while researching this book described how she became tougher on the outside but softer on the inside, and that rings true. Off-the-cuff remarks from friends and strangers alike would really sting. I felt I had no choice but to put on a brave face. Being around pregnant friends was particularly difficult. I persevered with my mothers’ group for some time even though I always came away upset by something that was said. I knew I was being uncharacteristically oversensitive, as none of the comments (like babies being like buses and all coming along at once) were made with any intention of hurting me. I was aware that if I admitted to being upset, it would make others feel guilty. At the same time, I had lost two babies within six months and it seemed that they had been completely forgotten about by other people. There were also moments where I felt the pregnancy losses had become all-consuming. It was as if every aspect of my life related back to them.

The reality was that I was extremely fortunate. As a counsellor summed it up at our one session, my worst-case scenario was that I had one healthy child. Still, I had a nagging sadness over my failures and lost babies. I thought back to an interview I had done two years earlier with Emma McLeod, a Sydney mother who had established the Stillbirth Foundation Australia—to raise awareness and fund research, following the loss of her second child, Olivia, at 36 weeks. I had believed Emma when she told me that pregnancy loss was not something you ever got over, but something you learned to live with. Now I could say I genuinely understood what she meant.

After six months of monitoring, I was told that it would be safe for me to conceive, so my husband and I started trying for another baby. A few weeks after the due date of my fourth pregnancy, I discovered I was expecting. This time I was on a recurrent miscarriage program and would be closely monitored. But the pregnancy only lasted a few days.

The fact that it was over so quickly, meant it was much less traumatic than the previous two miscarriages, but I did start to wonder if our luck was ever going to change. There was no question that we would try again; in fact I was starting to feel quite stubborn and determined. Three months later, shortly after turning 35, I was pregnant for the sixth time. Any sense of excitement was completely diminished.

The first few months were miserable. I felt sick constantly and guilty for not being happy. The frequent blood tests and scans were simultaneously reassuring and terrifying, as each time I faced the prospect of bad news. As ever, I knew the statistics. Based on my age and my history, I had about a 60 per cent chance of this pregnancy being successful.

As the pregnancy progressed, I learned that 10 friends and colleagues, including two particularly close friends, were also expecting, which created very mixed emotions for me. I was worried for all of them as well as for myself, and I was terrified about how I would cope if I miscarried again. Sadly, one of the other pregnancies ended in a missed miscarriage, discovered at a dating scan.

Throughout this pregnancy, I struggled to deal with casual remarks from friends—and from some strangers who couldn’t resist passing comment. When people said, ‘Oh, you must be so excited,’ I would want to explain why I found that impossible, no matter how hard I tried. When remarks were made about the age gap between my daughter and the baby, I would want to scream, ‘But this wasn’t how it was supposed to be.’ Nine times out of 10, I managed to bite my lip.

Even into the third trimester, I would not believe friends when they tried to reassure me that I was ‘almost there’ or that they had a ‘good feeling’ about this pregnancy. At 34 weeks I summoned the courage to buy the first item for my baby, but had still not unpacked any baby clothes or arranged the nursery. I was desperate for the baby to arrive, but also still in denial and completely unprepared. I would try confiding in close friends and family about my mixed feelings, but would often find it impossible to explain exactly how I felt, or would worry that I would appear self-indulgent or self-pitying.

There were pockets of support, and some of these came from unexpected and at times contradictory sources. Feeling slightly more confident once into the second trimester, I started browsing through some pregnancy websites, where I stumbled across online forums for women who had suffered pregnancy loss. I had never pictured myself as someone who would use ‘chatrooms’ but I discovered that I could read about other people’s thoughts and experiences without making a comment or exposing myself. Most of the time I read the stories and discussions and occasionally I would contribute.

What I found was truly inspiring: groups of women from across the world who were united by a common experience and regularly logged in to offer a listening ear, advice and to share the highs and lows of friends they would never meet. In cyberspace, I now know, you can pour your heart out, and although no one can see your tears, they can genuinely share your pain. There is no shame in admitting to emotions that many people would find incomprehensible or selfish.

But this reliance on ‘virtual’ friends again reminded me of the silence around pregnancy loss and the dearth of support and information. Many contributors to the online forums craved advice and statistics and they were turning to each other for answers in the absence of other reliable information.

The idea for this book began to crystallise in my mind. And once I began to talk to other women about it, I became convinced it was something that I had to do. Now with this project in mind, I began to talk to and read the stories of other women with greater intensity. While I was often moved by the sadness of the experiences I was hearing about, I was also inspired by the strength of women and couples who have