“It wasn’t a baby”: The many meanings of pregnancy loss
Susie Kilshaw’s anthropological research is fixing unintended gaps in miscarriage care
Miscarriage is a relatively common occurrence – roughly one in five women go through it at some point in their lives. For some, it’s a dreaded, recurring experience. For many, it’s an incredibly taxing one, physically and emotionally.
It wasn’t always recognised as such. Advocacy campaigns, academic research and women openly sharing their stories have done a great deal to raise awareness of the reality of pregnancy loss. Those changes have been gradually matched by evolutions in its clinical management — notably, the recognition of ‘pregnancy remains’ as deserving of respect and sensitivity, to be handled separately from clinical waste.
In the UK, ‘pregnancy remains’ refers to any tissue expelled or removed from a woman’s body following the end of her pregnancy prior to 24 weeks’ gestation1. It is legally the woman’s tissue, and those who miscarry at home are free to handle the material in any way they wish, with most flushing it down the toilet. But the clinical setting is an institutional context, imbued with meaning-producing power not held by the home. Clinical practices are an extension of social beliefs: as such, they are subject to much higher-stakes scrutiny.
British public opinion was especially roused to the issue of proper disposal following a series of scandals. The unauthorised storage of 1,500 miscarried, stillborn or aborted fetuses at Alder Hey Children’s Hospital caused widespread outrage, leading to the passing of the 2004 Human Tissue Act and the creation of the Human Tissue Authority (HTA) to establish a framework for sensitive disposal. Later scandals saw the establishment of specific HTA guidance and a National Bereavement Care Pathway (NBCP) to help professionals provide more humane and understanding care.
With these developments, practices evolved to distinguish the treatment of fetal tissue from that of clinical waste, “on the basis of its potential to develop into a human being”2. Official guidance also evolved to present women with choices commensurate with the pain of their loss: ceremonial cremation or burial, release for private arrangements or to a funeral director, and separate incineration. To ensure a paper trail, this choice is typically recorded using a consent form — a seemingly bureaucratic detail that actually proves central to women’s experiences.
A world of lived experiences
Susie Kilshaw, a professor of medical anthropology at University College London, has been studying ‘pregnancy ends’ for a decade. She uses the term in order to better “encapsulate the complexity and nuance of women’s experiences”, from miscarriage to stillbirths, ectopic pregnancies, molar pregnancies and terminations.
This semantic choice also aims to “remove intentionality as the defining element”. Women’s complex and nuanced reproductive experiences are often restrictively categorised using only the metric of choice — not just pregnancy outcomes, but infertility and childlessness, as
’s work sensitively highlights. Talking about ‘pregnancy ends’ lessens the potent moral assumptions that come with categories of loss, and makes room for women moving between categories, as when a miscarriage happens just before a planned abortion.Similarly, Kilshaw’s work “engages with understandings of the foetus” but speaks of ‘pregnancy remains’ to acknowledge the fact that not all situations include a foetal body (in the case of partial miscarriage, for example) and honour the extreme emotional ambiguity that surrounds the material reality of pregnancy. “The foetus”, she writes, “is a shifting and flexible entity, which can be several things simultaneously, from a part of the woman’s body to separate tissue, a bundle of cells, a site of diagnosis, a baby, or a child”.
This ambiguity is precisely what Kilshaw explores in two 2024 papers based on ethnographic research conducted between 2012 and 2023 with women in England3. Most of her participants had experienced first-trimester miscarriages requiring surgical management, “either to remove the entire pregnancy or ‘retained products of conception’ when a miscarriage was incomplete”. Interviews focused on their experience of the consenting process for sensitive disposal, including both the discussions with the medical staff and the aforementioned physical consent form.
‘I’m a mum too’
For some interviewees, institutional assumptions surrounding miscarriage supported their own framing. Malaika4, who miscarried at 14 weeks, was grateful for the ability to spend a few final moments with her baby, and the sensitivity with which its body was treated:
“I was in hospital for four or five days, and the sisters on the ward said, ‘Do you want to see your baby?’... They brought him with so much respect… in a little basket. He was on a beautiful, embroidered sheet with a little blanket on top. […] I was able to sit with him. I took a little picture. His body had changed a lot… so I just took a picture of his little foot near my fingernail.”
Jennifer and her partner similarly welcomed the ceremonial service offered to them by the clinic after their 10-week miscarriage, and the opportunity to write their child’s name in a book of remembrance.
“You didn’t just lose a pregnancy, you lost the one-year-old you imagined and the five-year-old on the first day of school and the grown-up that you pictured in your mind, even in just those few short weeks… Even though they might not have been public and it might not have been a child you met and held… It was your child… I’m a mum too. Just because I’m not pushing a buggy or going to the school gate, it doesn’t mean that I wasn’t a mum.”
For these women, the understanding of miscarriage as “the loss of a baby, who leaves behind a mother whose appropriate reaction is one of bereavement” was crucial to their grieving and healing process. It was a much-needed recognition of the magnitude of their loss — especially vital when the outside world might not always validate their pain, particularly for shorter pregnancies like Jennifer’s. The institutional framework comforted them in their experience.
‘It wasn’t a baby’
But all of Kilshaw’s participants did not feel the same. In an otherwise extremely understanding and gentle process, with most women voicing their gratitude at the incredible care provided to them by the medical staff, the disposal pathway stood out to many as “inappropriate” if not “distressing”.
For Scarlett, language like ‘funeral director’ and ‘ceremonial cremation’ felt alien to how she had been conceptualising of her pregnancy end:
“For me... with my personal belief system... it’s not a baby. It’s a clump of cells that has a lot of hopes and dreams attached to it and it could be a baby, but it’s not a baby... So then being confronted with ... that consent form and the treating of it as more than a small clump of cells, [...] it made it a lot more upsetting because it makes it a baby, which isn’t how I had been thinking of it.... So being asked to treat it like it was a baby suddenly became very upsetting.”
The women’s testimonies repeatedly highlighted a disconnect between the object of their loss and the biological material. For many, their grief was directed towards an abstract idea of what could have been rather than towards the remains themselves — especially at an early gestational stage, before the 12-week scan that typically marks a crucial step in the “production of fetal personhood”5.
“[T]here wasn’t a real emotional attachment. That’s not to say I wasn’t upset, there was a lot of crying and upset about what could have been, but not really upset about what it was at that point.... For me, it wasn’t a baby loss. That’s very different. I think if it had been something like 22 weeks or something much later, I would have had a completely different response to it”.
Thinking of the pregnancy remains as medical waste or tissue, an extension of their own bodies similar to material removed during other kinds of surgeries, often helped the women cope with their loss. Being confronted with ‘person-making’ language suddenly made it “babylike” and therefore “much more traumatic”.
In most clinics, no differentiation was made between different types of pregnancy remains, which also led to even starker disconnects: one participant who had an anembryonic pregnancy (no fetus or embryo present) was still presented with the option of a funeral service.
The timing of the process sometimes worsened the disconnect. The topic of disposal was only broached at the time of surgery, which could come weeks after women were told they had miscarried6. The disposal discussion therefore often re-opened a healing wound, stirring up emotions many had already processed and begun to recover from:
“Then to have the consent... to talk about the remains... it really threw me... because I think for a while now it hasn’t been a pregnancy for me, it’s been an illness, a chronic illness that I’ve been dealing with and trying to get better from.”
Several women also felt that the consenting process robbed them of agency in their own miscarriage, merely informing them rather than “including them as active participants” — despite the fact that had they been home, they would’ve been free to handle their pregnancy end as they wished. Others, by contrast, were overwhelmed by the introduction of a choice they were not warned about at any point in the care pathway:
“I did not realise there was going to be a discussion, I thought … they take it out and it goes down a tube into medical waste… it almost bothered me that I had to make that decision. [...] I would have preferred not to have the choice”.
It might seem odd that tick-boxes on an administrative form should hold so much emotional weight for these women, especially as the more ‘personhood-dependent’ choices were typically offered alongside neutral ones.
But as Kilshaw’s work shows, in times of uncertainty and ambivalence, official meanings hold a special kind of normative authority. The form does not draw an explicit moral hierarchy between the choices, of course — but motherhood is already so laden with moral categories, with pronouncements of good and bad mothers, helicopter mothers and refrigerator mothers, that value judgments have a tendency to creep into every stage of the journey.
Maggie’s fetus’ heartbeat stopped at 18 weeks, and she underwent medical management of miscarriage to remove it from her body. She told Kilshaw:
“The specialist midwife said: . . . ‘what we do is if you don’t want to have a service or funeral. . . all of the babies are cremated’ . . . And that just made me burst into tears because I felt like somebody else is arranging a service for my. . fetus that I am not going to. So now I am like a weird mother that doesn’t care: ‘there was a service for your baby, and you didn’t go?’”
Even a hint of, “just so you know, others are choosing to do X, to enact this special kind of reverence” is enough to make women feel like their choice is the wrong one. And in a time as sensitive as pregnancy loss, that feeling is a failure of care7.
The overcorrection trap
Paradoxically, in trying to be more sensitive, the evolution of disposal guidance inadvertently introduced new potential for pain. The pendulum swung too far in one direction, leaving little space for experiences that didn’t match the upgraded understanding.
This pattern has been highlighted in other healthcare settings. In a conversation with On Being host
, surgeon, writer, and public health expert explains that in gradually moving away from ‘doctor knows best’ paternalism towards patient autonomy, modern medicine sometimes leaves too much room for agency, creating unduly anxiety in patients who seek a reassuring expert opinion.“‘Here is your condition. Here are the options: option A, option B, option C. Here are the pros, the cons, the risks, the benefits. Now what do you want to do?’ [...] That was the way I was taught to exercise my authority, give people knowledge and then ask what they want to do with it. But what I found in the real world was that patients would ask back, ‘Well, what would you do?’
And so what we’re taught to say, and so that you don’t take away their agency, was, “No, no, no. This is not for me to decide, this is for you to decide. […] You have to make the call here, around what’s more important to you.” And people felt completely abandoned. […] But the palliative care clinicians or geriatricians, they would go one step further. They would listen, and ask, “What are your goals? What are your priorities? What really matters to you?
You have to be a genuine counselor, and the only way you can offer wisdom is by connecting what you know and have observed […] to the goals that this individual person has. […] And that is hard, I had to learn from the palliative care folks.”
It isn’t a coincidence that palliative care professionals bring the most sensitive approaches. They also happen to be the ones whose work is closest to the ongoing, intimate dependency care that one might give to a child or an elderly parent. They understand most viscerally that care has to be tailored; that flexibility is key to adapt to an individual’s ever-changing needs and circumstances.
In the same way, Kilshaw’s research shows that even the best-intentioned approaches fail if they remain ‘one-size-fits-all’. Some women were comforted by the assumption of bereavement, some distressed. Some found it validating to be asked if they wanted to give their baby a name, while some felt that once offered, declining to choose would mean denying their fetus an identity. In caregiving contexts, which deal with incredibly complex emotional worlds, being prescriptive rarely works. The strength of the anthropologist, like that of the caregiver, lies in shedding in-built assumptions in order to get as close as possible to the reality of individual experience.
Changing the rules
This adaptability is precisely what Kilshaw managed to bake into the 2024 updated HTA guidance. Indeed, this wouldn’t be The Fifth Wave if we didn’t talk about innovation: and in a move many academics spend entire careers dreaming about, Kilshaw actually got the official policies changed based on her findings.
She worked for months with the HTA and the NBCP, tailoring their guidance to better “accommodate a diverse range of approaches” and avoid “challenging a woman’s experience of and agency about her body, pregnancy and pregnancy remains”. The previous version already specified that women should be afforded the possibility not to have to make a decision, but many trusts didn’t allow for this. Even when they did, women were still confronted with the sometimes distressing list of options in order to decline choosing.
So Kilshaw pushed for a clear and mandatory opt-out from the consenting process itself, with better, discussion-based information sharing earlier in the care pathway so as to gradually appraise what information the patient wants, instead of immediately presenting them with potentially upsetting language.
Moreover, if the choices do get presented, offering all disposal options is now mandatory, including regular incineration previously listed as an option only ‘in certain circumstances’. This means all women now have the choice not to pick a ‘personhood-centred’ option at odds with their understanding of their pregnancy remains.
I was able to track down the archived 2015 version of the guidance8. On top of the changes to the actual rules, there are subtle but crucial changes in language that further emphasise the breadth of possible lived experiences. For example, the 2024 update adds a mention that “some women might not experience pregnancy loss as a bereavement”; as well as, “in some cases, a woman may welcome receiving the information”, to honour the fact that it isn’t the automatic or even the majority view.
No longer in charge
Beyond the UK context, Kilshaw’s research in Qatar shows that experiences of pregnancy loss are not only dependent on the individual, but culturally and socially contingent. Qatari women are more likely than British women to know of others who have miscarried, and typically perceive the event as “relatively normal and common”, a natural, inevitable process that simply means the baby was not meant to be born. Strong faith helps in retaining joy and hope: lost babies are ‘birds in heaven’ who will welcome their mothers into paradise.
Building on both her research and her own experience of miscarriage, Kilshaw offers a fascinating reflection on control:
“The British women we spoke to waited until later in life to get pregnant and were used to managing their careers and lives to a fine-tuned degree. Most of our interviewees were in their 30s and had decided to get married as a preface to family life, with the intention of having a baby as soon as possible after the wedding. Most planned their pregnancies and prepared their bodies by taking vitamins, exercising, limiting their alcohol intake, and using various tools to chart and map their fertility. They often had named their babies and thought of them as children by an early stage of pregnancy. The sense of loss in the wake of a miscarriage was as much about losing control and an envisioned future as about the death of the baby.
In Qatar, where faith is pervasive, the women we spoke with often felt that things were in God’s hands rather than their own. Control had already been ceded, and the grief was often less intense compared to what most of our U.K. interviewees experienced. Although birth control is available, women saw pregnancy as the expected outcome of sex with their husbands, and miscarriage as part of the normal experience of a woman’s reproductive journey.
After my first miscarriage 10 years ago, I felt isolated, devastated, and unable to access a framework that would help me make sense of the experience. But each time I had a miscarriage I responded differently. For me, the ultimate lesson I learned from my pregnancies and miscarriages was that I would have to relinquish a sense of control over my life—a message that became even more significant after I had two healthy daughters. If there’s one thing a baby teaches us—whether through a miscarriage or a full-term delivery—it is that we are no longer in charge.”
Kilshaw’s research drives home the fact that caregiving, too, be it in an intimate home setting or a clinical one, is about relinquishing a sense of control over those we care for. How they experience the world, how they react to their circumstances, even when it doesn’t fit what we expect or think is right. Rather than imposing pre-conceived frameworks, caregiving is about offering a presence that makes space for every shade of experience, every tear — or lack thereof.
This research also shows that building the futures of care takes many forms: from the most radical new models to painstaking word changes to obscure official documents. And each of those changes matters, visible or invisible. They are building, brick by brick, a more caring future.
References
Kilshaw, S. (2024). ‘Now I’m a weird mother who doesn’t care’: Women’s experiences of pregnancy remains disposal following miscarriage in England. Mortality, 30(1), 215–232.
Kilshaw, S. (2024) Women’s experiences of the consenting process for pregnancy remains disposal following early miscarriage. BMJ Sexual & Reproductive Health, 50, 99-106.
Kilshaw, S. (2017) ‘How Culture Shapes Perceptions of Miscarriage‘. Sapiens.
There are many more fascinating insights and subtleties in Kilshaw’s work, I really recommend reading the papers themselves if you are interested. All open access.
For more resources, check out the Sands charity or Tommy’s, both doing crucial work in this space. The new Birth Companions Institute also has great material.
Further reading
Past this point, there is a clearer set of legal rules regarding disposal.
All quoted passages from here onwards are from Kilshaw (2024a) and Kilshaw (2024b).
The data also includes 40 interviews with women in Qatar, not featured in this specific work.
All names are pseudonyms used by Kilshaw in her papers.
Middlemiss (2024). Invisible Labours: The reproductive politics of second trimester pregnancy loss in England. Berghahn Books. Cited in Kilshaw (2024).
Typically in the case of women initially opting for medical management.
Especially as there are no health outcomes at stake here — obviously, moral pronouncements on parenting can be completely justify when a child’s safety or well-being is in question.
The Internet Archive is truly a magical wonderland!
This was utterly fascinating! Still gathering my thoughts about it, but thank you so much for taking the time to write with so much nuance and sensitivity about such a complex issue. I love how your work examines the different contexts of care, and what these different contexts can teach us about each another.