I took part in the October 2023 Compassionate Mind Foundation Conference by presenting these thoughts on the final day (I think the formatting has gone awry):
I am here today because I had miscarriages. My first of four happened twenty-one years ago, and my experience of it, overshadowed by a dire lack of support and understanding, inspired me to re-train as a psychotherapist. It also made an author out of me, and in 2019 my first book – The Brink of Being, talking about miscarriage was published here in the UK, and in the USA. I tend to use a few lenses to look at miscarriage, but the one of ‘transitions in identity’ today is apposite, because who we are after a miscarriage, and ‘who’ we lost goes to the heart of the experience for many. It also happens to be wonderful timing to be here, as we come to the end of Babyloss Awareness Week.
Giving birth to two tiny dead baby girls, in the 22nd week of pregnancy re-shaped my personal identity as well as my professional one – there will always be the ‘before’ me and the ‘after’ me. The latter remains precariously defined. Aged 29, I was very obviously pregnant for the first time, and then quickly not, my breasts suddenly full of milk but without babies to feed. Had I become a mother then? Were my ‘foetuses’ my ‘babies’ or even my ‘daughters’? Will they ever be ‘late siblings’ to my two living sons? Do their names, Matilda and Florence, inscribed on a gravestone, define their identities without their presence on a legal register?
The three of us continue to have ambiguous identities, perhaps always in transition and existing in a liminal space inhabited by countless other bereaved parents-to-be. We lack co-ordinates on our cultural map of grief and fail to find secure places on genograms. My subsequent three miscarriages – too early for me to ‘deliver’ in a hospital, elicit even more precarious identities, without my body swelling enough to identify me as objectively pregnant, nor resulting in names on gravestones.
Despite notable and important improvements in supportive care for miscarriage in the NHS, and a boosted awareness and understanding of miscarriage in our culture in the years that I have been involved in advocating for both, it is fair to say there remains a great room for improvement. A persistent lack of resourcing means a ‘miscarriage’ remains a medically unimportant event, despite its potential to be a profound emotional emergency with the risk of mental ill health in its wake. And culturally, we continue to shy away from the provocative issues the experience can awaken in us too. I hope it will become clear that compassion offers a much needed – and demanded for – response for everyone involved in supportive care, regardless of the availability of resources. I won’t linger on a definition of compassion here as that might be almost insulting, but it should become obvious how critical it becomes in the face of distress of such a complex loss.
In particular I highlight the need to employ a curiosity toward those suffering in order to hear the full story of a pregnancy that was cut short, and the potential identities forged, lost and gained. Being led by curiosity is the opposite of the more usual response, which is to avoid detailed conversations, or at worse, to close them down entirely. In turn, this curiosity often rests upon a courage to turn toward some unsettling ideas, which is why compassion is such an ideal notion here.
An invisible identity: a child in mind
I want to start with a consideration of identities forged from the ‘inside’ of a parent-to-be rather than those constructed from the ‘outside’ by our culture, law and medical paradigm as I’ll come on to discuss. In my book, I quote Hilary Mantel’s beautiful notion of ‘a child in mind’ that she describes in her memoir Giving Up The Ghost. She was desperate to conceive a child but was unable to. Even without a positive pregnancy test, the existence of a richly annotated life for her imagined child nestled in her mind, and her heart.
When you think you’re pregnant, and you’re not, what happens to the child that has already formed in your mind? You keep it filed in a drawer of your consciousness, like a short story that wouldn’t work after the opening lines.
A deeply felt pain for a lost, and privately built, future family was also wonderfully captured by the author William Henry Searle in his recently published book Elowen. Elowen is the name of his daughter, who died in her mother’s womb two weeks before her due date. As soon as the line emerged on the pregnancy test, his dreams for her sprung more to life in his mind. He imagined sitting with her “beneath our oak tree … listening together, her soft voice asking Daddy?”. He wrote her name on any piece of paper he could find, and chanted it under his breath as he did the housework. He thought of the birds and the seashells she would marvel over.
Such rich and privately held dreams as these account for much of the weight of loss of a baby in pregnancy, as these two examples straddling pre-conception to full-term gestation show so powerfully. They account for the flourishing of a powerful psychological and emotional bond between a parent-to-be and a child-to-be, that other people don’t know about, nor tend to want to find out about. They – we – tend to get hung up on fears (that I’ll come on to) as well as medical and legal definitions of miscarriage that involve embryos, foetuses, ectopics, ‘moles’, pregnancies progressing or failing. There may even be references to ‘bunches of cells’. The yearned-for ‘child in mind’ has an invisible identity, with the equally invisible parent-in-mind left bereft, and woefully misunderstood.
A few facts
I think it is relevant to contextualise the experience of miscarriage in its medical paradigm, because the latter informs the perplexing issues of ‘identity’ that I have alluded to. While a pregnancy can end early without complication and without the need for medical attention, much of the distress that I come across in support groups and my consulting room relates to the collision of identities: that between an expectant parent (the inside out perspective if you like) and, once over the threshold of a healthcare setting, that of a medical ‘patient’ (the outside in perspective).
Miscarriage is not uncommon. Tommy’s – the UK’s largest babyloss charity -suggests around 500 miscarriages happen each day in the UK. It refers to the most common complication of early pregnancy and is often quoted to affect one in four pregnancies. The main causes are thought to be genetic (more than half), hormonal, associated with blood-clotting problems, or due to some severe infections. Anatomical reasons tend to explain later miscarriages – such as where the cervix is weak (or ‘incompetent’ as it used to be called – mine was), the uterus is irregular in shape or has large fibroids. The known causes only account for around half of miscarriages investigated though, and I won’t go into the thresholds for investigations.
Miscarriage is most likely to happen in the first twelve weeks of pregnancy (we think with 85% occurring), although it can also happen until the time it is legally deemed a ‘stillbirth’. If ‘stillborn’, the birth needs recording on a register and a mother is afforded statutory maternity rights. In the UK, this means up until the twenty-fourth week of pregnancy begins, while in the US and Australia the boundary lies a month earlier. So, Matilda, Florence, and myself would have different legal, and cultural, identities had I given birth to them in Adelaide or Arkansas.
Since research papers refer only to miscarriages in pregnancies that have been diagnosed medically, and not to those discovered at home with a shop-bought pregnancy test, it’s possible that our estimates are low. Also, given that a greater proportion of women are choosing to delay motherhood, and the risk of miscarriage increases with maternal age, rates could be rising.
It might be that miscarriage will persist in higher numbers than it should because it has taken far too long for the causes – and possible prevention– to be taken seriously by funders for research. It was only in 2016 Tommy’s opened a research hub with a big portfolio and results of some studies are already beginning to emerge, with more hope in the air for breakthroughs. It has also taken an equally long time for the emotional and psychological impact of miscarriage to be considered, by healthcare professionals, as serious issues – something talking therapists have known about for a very long time of course.
When a miscarriage occurs informs the medical care received. In short, the later the miscarriage, the more likely the ‘patient’ will be cared for on a labour ward, with staff more likely to be attuned to its physical and emotional fallout. Specialist ‘bereavement midwives’ may be on shift, and more midwives are being trained as such. Their work involves compassionate care for the delivery of a tiny dead baby’s body, adequate pain relief, and appropriate time and support around decisions that need to be made about post-mortems and disposal. Depending on the NHS Trust concerned, there might even be funding for a funeral and psychological support for the bereaved.
Early Pregnancy Units, attached to many hospitals, also offer support for problems in early pregnancy, and like labour wards, tend to be staffed with professionals who are experienced in pregnancy loss, and trained in compassionate care. However, earlier miscarriages that present in A&E (because EPUs tend to be open during normal working hours) or are diagnosed at a 12-week anomaly scan as a ‘missed miscarriage’ (when the pregnancy stopped progressing without symptoms of bleeding or pain) tend to receive shorter shrift – especially if there is no medical emergency presenting (such as heavy bleeding or ectopic pregnancy). I continue to hear stories of sonographers who break bad news bluntly or A&E doctors who discharge women with paracetamol and advice to prepare themselves for ‘something like a heavy period’.
‘Identity’ of miscarriage
So far, I have been considering the premature end of a pregnancy that results from conception in the ‘usual’ way – ie a fertilized egg that stops developing further into its embryonic or foetal state at any time before the 24th week of pregnancy. But when I think and talk about miscarriage, I also think about ectopic and molar pregnancies that don’t quite identify as miscarriage. These more unusual pregnancies can test people’s notion of whether a ‘baby’ was lost even more than a miscarriage can.
Put simply – ‘ectopic’ (meaning ‘out of place’) refers to a pregnancy where an egg fertilises successfully, but then goes on to implant where it can’t thrive, outside of the womb – usually in a fallopian tube, or far more rarely elsewhere inside the body. The RCOG report an incidence of 11 in 1000 pregnancies in the UK, which can become life-threatening if the growing embryo ruptures a fallopian tube.
Also very simply, a ‘molar pregnancy’ begins with the abnormal fertilisation of an egg that implants in the womb, and is also very rare, affecting only about 1 in 600 pregnancies. Rather than an embryo growing as it should, what was often called a ‘HYD AT IDIFORM mole’ (meaning a ‘fluid-filled mass of cells’) does instead. A very small number of these burrow excessively into the womb and develop into ‘choriocarcinoma’: a form of cancer, for which, thankfully, there is an almost 100 per cent treatment success rate.
If, biologically, a conception could never have resulted in a live birth, is it worth mourning in the same way? What was the identity of the unusually implanted embryo or ‘mole’? Isn’t it easier to assume – as so many consolations for early pregnancy loss chime – ‘it just wasn’t meant to be’? Does this mean, meant to be a human? These commonly held ideas ignore the ‘child in mind’, emerging with the revelation of a pregnancy test.
I also want to mention IVF cycles that don’t result in a pregnancy. Although there is no ‘carriage’ here to be ‘miscarried’, I know that we can forge profound psychic and emotional bonds with our yearned-for embryos – or ‘embies’ as they are often fondly named by hopefuls – developing in a petri dish, or stored in liquid nitrogen, in much the same way that a pregnancy test might ignite.
But we tend to latch onto the idea of a death of a ‘baby’ with greater ease the more its biological identity matches the image in our mind’s eye. In turn, the idea of a ‘mother’ or ‘father’ or ‘parent’ tends to follow in its wake. An embryo in a dish, or barely nestled into a womb lining, or fallopian tube, or lacking in DNA challenges the cultural recognition of someone worth grieving.
Up to now, I have concentrated on definitions of identity that concern an expectant parent who loses a baby. But there may be other identities involved in a miscarriage as well, or instead. A compassionate response involves the willingness to find all of this out. Not all women – or indeed their partners – describe their miscarriage in terms of losing a ‘baby’. Every pregnancy is tethered to its own meaning and I have talked to many women – perhaps after many miscarriages – who call their baby into being only when safely in their arms after birth. A miscarriage can also happen during an unplanned for, or unwanted pregnancy when a psychological bond with a child in mind was never forged.
But even if there is no ‘baby’s’ identity at issue to confound others, this doesn’t necessarily make a miscarriage any easier to experience. Almost every woman I talk to, even seasoned feminists, identify as a ‘failure’ at some emotional level – to fulfil their partner’s or family’s desires, or to fulfil a lingering cultural ideal of womanhood or ‘success’. One client told me recently that she felt ‘invalid’ at a dinner amongst her parent friends, although sure in her desire to remain childfree. The female body in medicine has a precarious identity too – its associated reproductive processes remains under-researched and subject to an historic shame and disgust (the same could be said of the female mind too). The pains and distress of menstruation, lack of menstruation, infertility, menopause, uterine problems, lactation difficulties, pregnancy sickness and birth trauma continue to lack parity with male health problems. I acknowledge that last year’s 10 year Womens Health Strategy for England is a positive step forward, but we have a long way to go.
We all know how fears can scramble our recognition of identities, including those forged after miscarriage. This is where compassion’s call upon courage becomes necessary.
Miscarriage is a messy and painful and inescapably visceral experience that make many people wince when they think about it in detail. It involves blood, clots, bodily tissues and pain – and the release of an embryonic or foetal body that could be barely discernible, or be one of a very small baby. Most miscarriages occur at a gestational stage when we can resist defining babyhood for fear of being categorical, even if a grieving parent defines their loss so: no human baby is deemed viable during the long stretch a miscarriage can occur (although some make the argument now that viability is edging toward 22 weeks) and the idea may jar with a pro-choice stance too – feminists have struggled with this tension: how to square their support for women’s right to choose abortion, with their desire to support those who lost a ‘baby’ in early pregnancy.
This may also partially account for the particularly marooned nature of funeral rites after miscarriage: they tend to be barely witnessed and have evolved language other than ‘birth’ or ‘death’. As one client told me after the hospital-arranged ten-minute funeral, ‘We didn’t invite guests, because we thought it may have seemed weird.’
So, in conclusion
While I call for compassion to surround the experience of miscarriage, there are reasons to be hopeful more will come. ‘Babyloss Awareness Week’ – an annual commemoration that barely flickered on the public register after my first miscarriage, now captures media attention, and Parliamentary time (today/now). In 2021, the Lancet devoted a series of work to highlighting the need for improving care with the authors calling for a “…complete rethink of the narrative around miscarriage and a comprehensive overhaul of medical care and advice offered to women who have them.”
As of 1st January 2023, 108 NHS England trusts (84%) have committed to The ‘National Bereavement Care Pathway’ which is a protocol of improved care for the bereaved after the death of a baby ‘at any gestation’, or after birth. More recently, The Royal College of Obstetricians and Gynaecologists updated its guidance for recurrent miscarriage patients, and just this summer, the Pregancy Loss Review was published by the Dpt of Health & Social Care. There has been a notable media splash around the incidence of PTSD and increasing good quality research highlighting the incidence of clinically recognisable anxiety and depression. The impact of miscarriage on partners are moving into the research frame too. More and more organisations are signing the Pregnancy Loss workplace pledge, and leave….
All these initiatives highlight the need for healthcare professionals to be trained in compassionate care, but they also highlight the desperate need for this to be consistent and of better quality. I still hear too many stories of the bereaved feeling woefully unsupported in their grief, grappling with identities that are ignored or misunderstood. Some are suffering seriously with mental ill health – which is why they end up in my support group or consulting room. While we are far better equipped to say ‘I’m sorry’ to someone after a miscarriage, we still tend to then back away. Asking something along the lines of: ‘Tell me what happened?’ could be an invitation to hear the full story of a pregnancy – that often begins way before conception. This could help us to understand the identities of the parents-to-be – or not, and their ‘child in mind’ or not.