Seventeen years ago, in the 22nd week of my first pregnancy, I awoke in the dead of night in excruciating pain, and about 36 hours after my admission to the nearest hospital’s labour ward, I had given birth to two tiny baby girls. One looked like me, the other like their father. As they were ‘miscarried’ rather than ‘stillborn’, we didn’t need to legally register their births or deaths, nor dispose of their bodies in the usual way. Regardless of the fact that the world around us believed otherwise, my husband and I knew that our daughters – Matilda and Florence – had both been born, and had died.
My miscarriage was a shocking, gruelling and traumatic experience – and over the following eight years I had three other miscarriages, at earlier gestations, in between the arrivals of my two living sons. My first pregnancy, ending as it did, galvanised me in my intention to retrain as a psychotherapist, and to offer my support to others going through pregnancy loss by volunteering for the Miscarriage Association in various guises. I have since come to learn, through both the clinical and support work I’ve done, how far too many women and couples have similar stories to mine to tell, and how much further we still have to go in offering adequate emotional support to those who need it – even in a counselling or psychotherapy setting.
The impact of pregnancy loss
Despite great improvement in both the medical care and cultural understanding of the impact of perinatal loss in recent years, including that of miscarriage, I’m saddened to hear frequent stories from the bereaved of a lack of understanding of the nature of miscarriage, and the complex losses it can often entail. The physical and emotional impact of a pregnancy ending early have long been minimised, and it’s taken a woefully long time for health professionals to realise that miscarriage can not only cause a ‘proper’ grief, but runs a risk of causing mental health problems too: anxiety, depression and even post-traumatic stress disorder. It can also seriously affect a woman’s mental health during a subsequent pregnancy, and cause anxiety around attaching to her newborn. This is especially so if miscarriage repeats – ‘recurrent miscarriage’ (affecting about one per cent of couples),1 can put a couple’s life on hold for years.
The reality is that emotional care after pregnancy loss (and by this I refer to miscarriage, ectopic pregnancy and molar pregnancy) in the NHS is patchy at best, and woefully underfunded. Last year’s Baby Loss Awareness Week in October (#BLAW2019) campaigned for the desperate need for improved psychological therapies for the bereaved. Unless and until this emerges, more women and couples are likely to turn to private practitioners for counselling or psychotherapy – and, anecdotally, I’m told the Miscarriage Association reports an increased demand for advice regarding such referrals from those calling its telephone support line.Â
The facts
‘Miscarriage’ refers to the most common complication of early pregnancy, and is often quoted as affecting one in four pregnancies. The research papers quote differing statistics that are hard to square: for example, one per cent of miscarriages happening after 12 weeks’ gestation2 and four per cent happening between 12–22 weeks.3 To confuse things more, °Õ´Ç³¾³¾²â’s charity suggests 85 per cent of pregnancies end before 12 weeks,4 and estimates that 515 miscarriages happened every day in 2018 in the UK. Miscarriage is most likely to happen in the first 12 weeks of pregnancy, although it can also happen until the 24th week, after which, in the UK, a baby born dead becomes ‘stillborn’ and must be buried or cremated. In the US 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.
Next in this issue
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, problems with a mother’s blood clotting response, and abnormalities of the womb shape. At long last, research is trying to establish firmer links with other suspected causes (such as various genetic causes and sperm DNA fragmentation), as well as possible preventative measures (such as drugs), but we still have a long way to go for the ‘one in four’ statistic to budge.
One in four pregnancies are estimated to end in miscarriage
515 miscarriages happened every day in the UK in 20184
Miscarriage is most likely to happen in the first 12 weeks of pregnancy4
Most bereaved don’t know why their pregnancy, or pregnancies, ended: couples will only be referred to a specialist clinic if they have been through three consecutive miscarriages, only around half will leave with a reason, and there’s no guarantee of prevention of another miscarriage. 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.
Most often, a womb will let go of a pregnancy that has stopped developing naturally, or it may need the assistance of medication or surgery. Until recently, the latter procedure was consistently referred to as an ‘evacuation of retained products of conception’ or ‘ERPC’. While this clunky clinical term is being phased out (and is replaced with ‘surgical management’), there’s a way to go before it evaporates entirely, and it most usually offends and hurts a grieving woman to hear. The ‘one in four’ statistic includes pregnancies that became ‘molar’ or ‘ectopic’ – rarer forms of early pregnancy loss. The former involve an abnormal fertilisation of an egg that implants in the womb, while the latter concerns the case of an embryo implanting in a place where pregnancy is impossible – most usually the fallopian tube. They both involve medical intervention, and in the case of ectopic pregnancies, can become life-threatening emergencies. And, as with other pregnancies miscarriages, they run the risk of causing serious mental health issues too.Â
Medical treatment
The demarcation between ‘early’ and ‘late’ miscarriage is important because the medical treatment for each tread different paths. It’s not because the emotional impact or size of grief increases as the weeks of gestation unfold; a miscarriage at nine weeks can hit as hard as one at 16 weeks, although it’s also possible that a miscarriage doesn’t hit hard at all – it may also be a relief to some women, or experienced as a ‘reproductive bump in the road’ by others. There are myriad meanings of pregnancy and it’s important to tune in to each particular one.
If an early miscarriage threatens, a woman is likely to call her GP, who may then refer her to the nearest Early Pregnancy Unit (EPU). One research doctor I spoke to estimates that about 50 per cent of women turning up to an average EPU will present with symptoms of threatened miscarriage – ie pain or bleeding, or both. The Association of Early Pregnancy Units also lists this as the most common reason for attendance.5 If a late miscarriage threatens though, it is far more likely for a woman to remain in hospital (rather than being sent home, which is the case with an uncomplicated early miscarriage). In which part of the hospital she will be treated depends upon hospital protocol: either a gynaecology 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 after 14 weeks of pregnancy. Staff in labour wards – as they are in EPUs – tend to be better attuned to the experiences and needs of miscarrying women than they are elsewhere, and there may well be a specialist bereavement midwife on call, who will manage their care. It also means they will support a couple through choices around post-mortems, disposing of a baby’s body and arranging for follow-up care.
The quality of care really matters, and nearly every story of a miscarriage I’ve heard will speak of this: both the good and the bad. In vulnerable times, we tend to remember words said to us, and while I hear many stories of compassionate ones said by medical staff, I also hear of the wounding of minimising or even cruel ones. Being told ‘at least it was early’ or ‘at least you can get pregnant’ rarely soothes. A miscarriage is rarely just a ‘medical’ event, but is often also an emotional emergency that can be ignored, and may well need to be talked through more than once.
Disenfranchised grief
Most cultures have rules about grief – how to do it, for how long and for whom. The Victorians were alarmingly prescriptive; spelling out lengths of time to grieve and even what type of crepe silk a woman should wear, depending on who had been loved and lost. We may not do that now, but we do still police grief – and miscarriage falls squarely into the camp of a ‘disenfranchised type’, an idea pioneered by an American academic, Kenneth Doka.6 I think it helps frame our cultural reluctance to embrace miscarriage as a serious loss.
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 in grief, and noted how these both tend to evaporate in three situations:
- where a relationship with the dead isn’t recognised – such as when a partner in an extramarital affair may be shunned by the dead person’s family;
- where a loss isn’t recognised – as is the case of a loss of mind in dementia, or redundancy of a job being minimised;
- where the griever isn’t recognised – such as a very young child, or very old adult.
While miscarriage almost always involves the first two categories, we also tend to swerve it even more when it also involves the third – such as the grief of miscarriage felt by male and female partners, or of teenage girls, or of those with learning difficulties. Research attention and medical care are only recently turning to male partners – we have a way to go with these others who can be affected.
With miscarriage, there’s a puzzling relationship with the ‘dead’: in short, we worry if there is a ‘baby’ who has died, and therefore, if it’s possible to actually have a relationship at all. In medical terms, most miscarriages happen when we are at an ‘embryo’ stage of development, or after nine weeks after conception, a ‘foetus’ – but no grieving woman or man I have ever spoken to over the years describes their relationship to their unborn potential child with these clinical words. They refer to what they have lost as a ‘baby’. And, as I mentioned above, later miscarriages may involve more gestationally developed babies, but they aren’t legally endorsed to be so.
But I know from my personal and professional experience that the bond with a baby in pregnancy – however short that was, and however tiny a baby may be – can be complex, profound, long lasting and infused with a love that is palpable to be with if you allow for it to be spoken of. It may even exist without a pregnancy happening at all: as is the case of IVF, when embryos made outside of a woman’s body are transferred back into her womb, but fail to embed in the womb and continue as a pregnancy. This is why miscarriages (and IVF ‘losses’) are memorialised: online or in private burial sites, or increasingly arranged by hospitals.
This ‘child in mind’ engages a sometimes agonising yearning for a future that may have been mapped out in exquisite detail. In my experience, it’s exactly that detail that needs to be talked about. Such imaginings become an integral part of a loss – along with the innocence that any future pregnancy will end in a live birth.
In the research for my book, The brink of being: talking about miscarriage, I stumbled across a journal article written by a bereaved father, about his stillborn baby, Matilda. He reflects upon the ‘baby things’ he and his wife had collected during pregnancy. I think it beautifully sums up the emotional landscape a child-to-be can create, as these collected things were forced to become ‘the runner-up prize for her first tooth, her kindergarten drawings, her soccer trophies, a flower from her wedding bouquet, and pictures of her children’.7
Making space for all feelings
While miscarriage often involves a devastating and isolating grief for a particular future-oriented loss (that may even differ between couples), the bereaved also bear a number of difficult feelings that don’t always find a place to be heard. People don’t tend to be curious about miscarriage, and while they are more inclined to say, ‘I’m sorry’ to a bereaved person than ever before, they tend to leave it at that. It’s rare to be asked about the details of the bodily and emotional event, and what it all actually meant to the bereaved, which makes counselling or psychotherapy, or even support groups, such a valuable space for the bereaved to be heard, and for feelings to be validated.
Most women I speak to suffer with guilt: that somehow they should have done something differently so that their pregnancy would have progressed. Over the years, I have heard some extraordinarily creative ‘faults’, including ‘playing tennis’ or ‘standing too close to a hob’ – all in an effort, as I see it, to wrestle back some sort of control and meaning to an event that has no stated reason or enough understanding. And, women are socially conditioned to feel ‘at fault’ – not helped by some of the outdated misogynistic language around fertility and pregnancy loss: I have an ‘incompetent’ cervix that explains my first ‘failed’ pregnancy, although I can rest assured that my cervical mucus has never been accused of being ‘hostile’.
It’s also not unusual for women to feel angry at their care or at others who don’t understand their pain, and also to feel envy when other pregnancies unfold healthily to produce a live birth. And men can feel similarly, while under pressure to support their partner’s pain. It’s also common to cycle through a range of other feelings while she, or he, digests a sudden derailment of a planned future. Miscarriages are rarely forgotten, and often leave their mark in profound and lasting ways.
Related articles
References
1. Ockhuijsen HD, Boivin J, van den Hoogen A, Macklon NS. Coping after recurrent miscarriage: uncertainty and bracing for the worst. Journal of Family Planning and Reproductive Health Care 2013; 39(4): 250–56.
2. Wilcox AJ, Weinberg CR, O’Connor JF, Baird DD, Schlatterer JP, Canfield RE, Armstrong EG, Nisula BC. Incidence of early loss of pregnancy. New England Journal of Medicine 1988; 319(4): 189–94.
3. Larsen EC, Christiansen OB, Kolte AM, Macklon N. New insights into mechanisms behind miscarriage. BMC Medicine 2013; 11(1): 154.
4. °Õ´Ç³¾³¾²â’s. Early pregnancy. [Online.] tommys.org/ pregnancy-information/im-pregnant/early-dayspregnancy/how-common-miscarriage (accessed 21 January 2020).
5. Association of Early Pregnancy Units. [Online.] aepu.org. uk/ (accessed 21 January 2020).
6. Doka KJ (ed). Disenfranchised grief: recognizing hidden sorrow. Lexington: Lexington Books/DC Heath and Company; 1989.
7. Weaver-Hightower MB. Waltzing Matilda: an autoethnography of a father’s stillbirth. Journal of Contemporary Ethnography 2010; 41(4): 462–91.