‘In vulnerable times we tend to remember the words said to us’

Julia Bueno's book The Brink of Being: Talking About Miscarriage was runner up in the Popular Science category of the British Psychological Society's Book Award.

Twenty years ago, in the 22nd week of my first pregnancy, I awoke from sleep in excruciating pain. I knew that it had to be the beginnings of labour, even though I was three months away from my due date.

I was pregnant with twins and I had been resting at home as a result of a complicated pregnancy. Twenty-four hours later, I had given birth to two tiny baby girls.  Florence looked like me, Matilda looked like her father. This was my first miscarriage. People around me – medics and non-medics alike – struggled to understand not only what had happened, but also how it affected and re-defined me. While pregnancy loss is understood more than it was then, it remains a woefully misunderstood and under-supported experience.

I had three more miscarriages inbetween the births of my two living sons. Inspired by my own experiences, I became a psychotherapist supporting women and couples through infertility and pregnancy loss. Years into practice, I continue to hear stories by the bereaved that echo each other: stories of a lack of understanding and emotional support from those around them, including healthcare professionals (although I write about miscarriage, I include the experience of ectopic and molar pregnancies too). Despite efforts to improve the care for those suffering pregnancy loss in the NHS – such as by the roll out of the National Bereavement Care Pathway since 2018 – this area of care remains underfunded, and many patients are failed. The pandemic hit services hard too, with many women left to endure both the diagnosis and management of a miscarriage without their partner or other support by their side, and with abbreviated follow up care.

Miscarriage can result in a complex type of grief that is hard to understand from the outside.

Many bereaved women need psychological support after pregnancy loss, and this likelihood increases if their care has been lacking. Miscarriage can result in a complex type of grief that is hard to understand from the outside (a 'disenfranchised' type I discuss below), but it can also provoke clinically recognised mental health problems too: anxiety, depression, and post-traumatic stress disorder (PTSD). Research led by Professor Tom Bourne into the prevalence of the latter has hit the headlines: 18 per cent of a cohort of over 650 women suffered symptoms of PTSD nine months after their early miscarriage. We also know that a woman's mental health during a pregnancy after loss can be seriously affected by anxiety, and that this may even linger and corrode a healthy attachment to her newborn.

The facts

'Miscarriage' refers to the most common complication of early pregnancy and is mostly quoted to affect one in four pregnancies. The UK's largest pregnancy charity Tommy's estimate that 500 babies were miscarried each day in 2020. The experience is most likely to happen in the first 12 weeks of pregnancy, although it refers to all losses occurring until the 24th week of pregnancy, after which a baby born dead is 'stillborn' and must be registered and legally disposed of. In the USA and Australia, this boundary is not drawn at viability as it is in the UK, but at 20 weeks. The lack of legal recognition of a baby born to miscarriage is a fraught, emotive and contentious issue, and a review into changing the law to allow for optional registration of a miscarriage is currently being pursued.

Miscarriage refers to a pregnancy that ends spontaneously – the causes are largely unknown but we do know that it can be due to genetic errors occurring in the developing embryo, or problems with a mother's blood clotting response, and abnormalities of in the shape of a womb. Long overdue research is attempting to establish firmer links with other suspected causes (for example, sperm DNA fragmentation), as well as investigating possible preventative measures – such as the recently approved treatment of some women with progesterone in early pregnancy. We still have a long way to go for the 'one in four' statistic to budge, and it is worth noting that women are tending to conceive later in age when genetic errors, and therefore miscarriages, become more likely.

For any clinician supporting a woman, it's crucial to tune into the relationship she had with her unborn.

Most bereaved don't know why their pregnancy – or pregnancies – ended. Couples will only be referred to a specialist 'recurrent miscarriage' clinic if they have been through three consecutive miscarriages and only around half will leave with a reason, with no guarantee of prevention of another loss even if so. (The Miscarriage Association has excellent information about the known causes and treatment of miscarriage, along with the latest research news.) Waiting lists for clinics are always long, and some couples have to travel very far to reach them… there is as yet no such clinic in Wales, for example.

Early vs late

It is commonly assumed that a woman suffers less emotional and physical impact with an earlier miscarriage, as opposed to a later one. But this isn't inevitably so – some early miscarriages can involve weeks of bleeding, acute pain and repeated surgeries, and can become a lifelong devastation. I've also worked with women who miscarried in their second trimester who recovered both physically and emotionally quickly. For any clinician supporting a woman, it's crucial to tune into the relationship she had with her unborn. This will be her own, and understanding the nuance of that will help her feel properly understood. Having said all that, the demarcation between 'early' and 'late' miscarriage does make for a different visceral experience, and their medical treatment treads different paths.

If an early miscarriage threatens (before 12 weeks), a woman is likely to call her GP who may then refer her to the nearest Early Pregnancy Unit. We think about half of women turning up to an EPU will present with symptoms of threatened miscarriage – i.e. pain or bleeding, or both. If a later miscarriage threatens though, it is far more likely for a woman to remain in hospital to deliver, and its protocol determines whether this will be either in a gynaecology ward, or a labour ward.

Generally, miscarriages after 20 weeks will be cared for in a labour ward, although some hospitals have the resources to accept women much earlier. Specialist staff in labour wards – as they are in EPUs – tend to be far more experienced with caring for miscarrying women than they are in A&E or gynaecology. A specialist midwife can also support them – and their partners – through choices around post-mortems, the disposing of a baby's body and arranging for follow-up care. A woman is likely to lactate if a loss happens after 16 weeks too, and she will need support and understanding as to what she may want to do with her milk supply.

The quality of care here really matters, and every story of a miscarriage I have heard will speak of the good and the bad. In vulnerable times we tend to remember the words said to us particularly well, and while I hear many stories of compassionate ones spoken by medical staff and friends and family, those that miss the mark contribute to a legacy of distress and potential trauma. Being told 'at least it was early' or, 'you are young and can get pregnant again' won't soothe the pain of losing a dreamed-for child, and the future annotated for him or her. A miscarriage is rarely just a 'medical' event.

Disenfranchised grief

All cultures have rules prescribing what deaths deserve a grief, and how they 'should' be mourned – this has meant my educating myself about other cultural death rites. We may police grief far less than we used to during Victorian times – when, for example, the type of silk was prescribed for a woman's dress, depending on her relationship to the deceased – but we do still hold onto an implicit 'pecking order' of grief.

Grief after pregnancy loss falls squarely into the camp of a 'disenfranchised type', an idea pioneered by an American academic, Kenneth Doka. Understanding this is crucial for any clinician working with the bereaved. Put simply, Doka's idea was that certain 'griefs' don't gain the 'rights' that other griefs unquestionably have. He was particularly interested in the essential role of validation and support from others, and noted how these both tend to evaporate in three situations: when a relationship with the dead isn't recognised, when a loss isn't recognised or when the griever isn't recognised.

I know from experience that the bond with an unborn can be complex, profound, long-lasting and infused with a parental love.

Miscarriage almost always involves the first two categories: there's a puzzling relationship with 'who' to grieve for. In short, we worry if there is a 'baby' that has died when legally we 'know' otherwise. But, for anyone supporting the bereaved, it is important to tune into the language they use. In medical terms, most miscarriages happen when we are at an 'embryo' stage of development (or after nine weeks after conception, a 'fetus'), but few potential parents I have ever spoken to uses these clinical words: they tend to refer to what they have lost as a 'baby'. Some don't though, and describing a loss as a 'baby' in these circumstances can jar.

Doka's third category is often involved when it comes to miscarriage, and I have worked with many 'non-recognised grievers' that are slowly making their way into the research community. Male partners are now recognised to be at risk of mental health problems, but research is vanishingly thin when it comes to lesbian partners, and gay partners using a surrogate. Teenagers and those with learning difficulties lack appropriate support and the maternity outcomes for Black, Asian and minority ethnic women are shockingly worse than their white counterparts too. For example, recent research shows that Black women are at 43 per cent higher risk of miscarriage than white women, and calls for urgent research into these disparities have been made by the Royal College of Obstetricians and Gynaecologists. Implicit racial bias is seen to play a role and as a white therapist, I make a point of bringing this issue into the consulting room.

I know from experience that the bond with an unborn – however brief in time that was – can be complex, profound, long-lasting and infused with a parental love. It may even exist without a pregnancy happening at all: as is the case of an anembryonic pregnancy (where no embryo develops), or in IVF when embryos made outside of a woman's body do not create a viable pregnancy. The fact that pregnancy and IVF losses are memorialised proves this bond, and advocacy has fought hard for resources to offer grieving parents the option to bury or cremate their baby – despite medical nomenclature using different terms.

A 'child in mind'

In Hilary Mantel's memoir Giving Up The Ghost, she movingly describes the pain of her infertility with the phrase a 'child in mind'. It's important for clinicians to explore this bond with a 'child in mind' to fully understand the depth of loss. This involves a yearning for a future that may have been mapped out by the bereaved in fine detail – what school they will attend or what clothes they will be dressed in. Babies can be named from the day of a positive pregnancy test – or even before. Such imaginings are constituent parts of a potentially great, and unseen, loss – along with the innocence that any future pregnancy will end in a live birth. Often, a woman will lose trust in her body and that it will be looked after in pregnancy well again.

Miscarriages are never forgotten, and often leave their mark in profound and lasting ways.

This complex grief accompanies a number of difficult feelings that are also important to give space to in any therapy room. Most women I speak to suffer with guilt, or its cousin of self-blame: that they should have done something differently to ensure their pregnancy would have progressed. I have heard some extraordinarily creative 'causes' of pregnancies ending too early – 'standing too close to a hob' or 'thinking negatively'. Such magical thinking is our attempt to wrestle back a measure of control over an event that causes intense grief and makes no sense. Women are also socially conditioned to feel responsible for much, not helped by some of relics of misogynistic language in fertility and pregnancy loss care. Medics can still use terms such as 'incompetent' cervix and 'failed' pregnancies, although I can rest assured that my cervical mucus has never been 'hostile'.

It's also not unusual for women, and her partner, to feel angry about the lack of knowledge about their loss, and inadequate care. It's important to allow for the common experience of envy toward others who have pregnancies that develop healthily to produce a live birth – a therapy room may be the only place for this uncomfortable feeling to be spoken of. It's also common for the bereaved to cycle through a range of other feelings while she, or he, digests a sudden derailment of a planned future.

We may have become better able to say 'I'm sorry' to someone after a miscarriage in the past few years, but we don't say four more vital words – 'tell me what happened'. Miscarriages are never forgotten, and often leave their mark in profound and lasting ways. Taking time to hear the full story of conception and pregnancy gives the bereaved a best chance of receiving appropriate care – whether it's supportive counselling or more targeted treatment for anxiety, depression or trauma. Rushing to give the latter without the former isn't enough.

About the author

Julia Bueno is a psychotherapist working in London and the author of The Brink of Being – talking about miscarriage. Her next book is Everyone's A Critic – stories of learning to feel good enough (published 25 August 2022).