Introduction by Croakey: “Every year miscarriage affects up to 150,000 Australians and the people that love them. So why are we so damned bad at dealing with it?”
That’s the question at the heart of Hard to Bear: Investigating the science and silence of miscarriage, by journalist and editor Isabelle Oderberg, which was officially launched last week in Melbourne (see tweets below).
As she notes, it’s a book for doctors, nurses, midwives, allied health professionals, psychologists, psychiatrists, emergency physicians, GPs, fertility specialists, mums, dads, friends, partners, workmates “and everyone in between, charting a course for better care for people who experience early pregnancy loss”.
Oderberg herself has experienced that loss seven times but, as she writes below, the book goes beyond the personal in its examination of how care must improve.
Isabelle Oderberg writes:
During the early stages of researching my book, Hard to Bear: Investigating the silence and science of miscarriage, as I approached people working in medicine, allied health, research and academia, I had a strong sense they were not wholly enthusiastic about me writing on this topic.
My impression was that, as someone who had experienced seven early pregnancy losses of varying types, they expected me to approach my analysis led by my heart and trauma, not with my head; as a patient, rather than as a journalist or researcher.
That’s why, in writing this book, I took a forensic approach to research, interviews and fact-checking. I carved out my personal experience into separate sections – vignettes – and when writing the investigative chapters, which comprise the bulk of the book, I focused all my energy on wearing a journalist’s hat firmly on my noggin.
And as I progressed in this work, I quickly came to realise there was so much I didn’t know, so much that wasn’t even broadly known, things I would never have learned if I was operating solely on assumption.
My lived experience gives me insight, understanding and empathy, but I began to learn there was so much research that had never been surfaced, so many stories to be told, and so many factors that have been completely, incomprehensibly ignored by medical and policy professionals. For instance, patients are not told after miscarriage or even recurrent miscarriage it can be a sentient marker for a raft of future health issues.
My lived experience is a useful tool to never lose sight of the human cost, but the foundations of my work are in the world of facts, data and research.
Fundamentally, I want doctors, nurses, midwives, allied health professionals, psychologists, psychiatrists, emergency physicians, GPs, fertility specialists, mums, dads, friends, partners, workmates and so many others to understand the following points (among others, of course, because the book is over 300 pages long) that are all expanded upon in detail in Hard to Bear: Investigating the science and silence of miscarriage.
Miscarriage can be a trigger for psychological distress, but also a marker for future physiological issues
Some people who experience miscarriage develop depression, anxiety or PTSD. It can even lead to suicide. Levels of depression or related issues can be equal in gravity to those experienced by people who lose a child or experience stillbirth. Beyond that, miscarriage can also be a marker for thrombosis, heart attack and other medical issues later in life. Somewhere between 105,000 and 150,000 families are affected by miscarriage each year. Every five minutes, someone experiences a miscarriage in Australia.
Yes, it is complicated, but there is low-hanging fruit we can act on right now
In my book I explain how different parts of the medical system overlap to create a space in which care simply isn’t of a standard we need, or where care is lacking altogether. Anyone with any knowledge of the medical system in Australia would argue it is criminally under-funded, under-resourced and has been badly managed and fragmented by successive state and federal governments. But while I make several recommendations for long-term strategies to improve the system, there is low-hanging fruit that we could grab right now that wouldn’t just have benefits for people experiencing miscarriage, but more broadly. Examples might be more readily accessible information for people attending emergency departments who leave due to long wait times, better referrals to mental health services and so on.
Misogyny plays a role in care deficits, as does classism, ableism, racism and gender bias
Clearly, misogyny in medicine is an issue being discussed widely, though many would argue the pace and depth of concrete action must be improved. While this is a topic I examine, I also look at the Reproductive Justice movement from America and what we could learn from this incredibly important framework. As defined by American civil rights campaigner, academic and writer Loretta Ross, Reproductive Justice is a movement to ensure people can control their fertility, but also agitates for all people to enjoy the right to become a parent – irrespective of any demographic(s) to which they belong, including those on low incomes – and to parent in safety. It’s a much broader definition than anything used in Australia in the reproductive rights or broader health space.
Its fundamental argument is that the people who require the care the most – people from marginalised groups and those who occupy places in several of those groups – must be placed at the centre of the movement. Just like in economics, trickle down medical care doesn’t work: we can see that in Julian Tudor Hart’s Inverse Care Law, which The Lancet points out is still depressingly relevant. But centring people affected by intersectional layers of disadvantage and letting changes trickle outwards? That is a much stronger recipe for success.
Our conversation about the environment must include toxicants
Infertility is on the rise across the world, including in Australia. Some of the factors in this rise are understood. Many are not. We need to take a holistic view of what is fuelling this worrying trend. Climate change and global warming are contributing factors. As are a number of other inputs. One thing we don’t discuss enough in this country is toxicants in our environment – everything from our food containers through to particulate matter in the air – and their undeniable relationship to that trend, and contribution to elevating risk factors for miscarriage. But these effects aren’t limited to pregnancy.
To some extent, miscarriage and fertility are the canaries in the coal mine; these are issues that should fill all of us with concern because they do truly affect all of us, whether or not we have a uterus. There are 50,000 agricultural, industrial and veterinary chemicals are being used in Australia as I type. A huge 1,500 are suspected to interfere with endocrine function, while others are potential carcinogens that can cause cancer. Only a very small number have been tested.
A little bit of kindness goes a long, long way… longer than you think, medically speaking
When interviewing patients who had been treated for miscarriage, several made mention of people who had shown them kindness and described their overwhelming gratitude for that empathy or sympathy. The depth of their feelings was shocking in that the experience of kindness was so rare that it was cherished like an absolute beacon of hope.
Things don’t have to be the way they overwhelmingly are, especially in the public system, with harried, over-worked, stressed staff. But also with staff who are not educated about the grief that can accompany a miscarriage or the trauma that can be compounded by a lack of compassion or understanding, not to mention the medical risks that come with shoddy, dismissive care (borne out in case studies of both placental shock, ectopic pregnancy and septicaemia).
Several studies also show that patients who are given care and support during subsequent pregnancies following miscarriage are less likely to have adverse outcomes.
When I asked Dame Professor Lesley Regan – British gynaecologist, professor of Obstetrics and Gynaecology at Imperial College London and Honorary Consultant at Imperial College Healthcare NHS Trust at St Mary’s Hospital – why she thought TLC (tender loving care) works, she said she didn’t exactly know, but acknowledged consistent research, including her own, showing it is effective. Though she also added, “If we’re all a bit kinder to each other, the world would be a better place, wouldn’t it?”
Miscarriage may seem like a narrow issue for many. However, in investigating the care and lack thereof surrounding it, I’ve come to view it as somewhat of a barometer; for how we treat people with a uterus in the medical system, how we care for people in their time of grief, and so very much more.
Isabelle Oderberg is a Melbourne-based journalist, author, and communications professional. Hard to Bear: Investigating the science and silence of miscarriage is her first book and is available to order here.
Read these reviews:
- The Saturday Paper: Hard to Bear: Investigating the science and silence of miscarriage
- Pro Bono News: Breaking the silence of miscarriage
From the launch
See Croakey’s archive of articles on pregnancy and childbirth