The Silent Epidemic of Stillbirth: how to break the taboo?

Adinda van ’t Klooster reflects on a decade of making artworks that explore the stigma of stillbirth. This is the first in a series of essays addressing miscarriage, prematurity, stillbirth and neonatal loss, published by The Polyphony to coincide with Baby Loss Awareness week, which runs 9-15 October every year.

The death of a baby is taboo in western society. Each year there are about 2.6 million stillbirths globally (Lawn et al. 2016), which makes stillbirth the fifth biggest cause of deaths worldwide (Frøen et al. 2011). The stillbirth figures haven’t moved much in the past ten years (WHO 2020; Lawn et al. 2016): this is shocking when you consider that stillbirth would be largely preventable with healthcare system improvements, as The Lancet concluded in 2016 following a large international study (The Lancet 2016). Misconceived fatalism has impeded progress in this area for many years: there is a general misconception that most stillbirths are inevitable, but this is not the case.  Congenital abnormalities account for only 7.4% of stillbirths after 28 weeks (Lawn et al. 2016). Other causes include childbirth complications (about 50 %), post-term pregnancy, maternal infections in pregnancy (including malaria, syphilis and HIV), maternal disorders (especially hypertension, obesity and diabetes) and fetal growth restriction (WHO 2020). Aside from the huge personal cost to families, The Lancet also notes that the financial cost of a stillbirth to care providers is between 10 to 70 % greater than the cost of a live birth, and suggests that improved healthcare provision in pregnancy would bring a quadruple return on investment (The Lancet 2016).

So why is not more being done? Although the United Nations Millennium Development Goals aimed to lower child mortality, stillbirths were not counted within the child mortality rate, and thus the issue was essentially ignored. Stillbirths must be counted and the data made publicly available. One obstacle to this is that currently the definition of a stillbirth differs from one country to another. The World Health Organisation (WHO) suggests a stillbirth is a baby born with no signs of life after 28 weeks of pregnancy and/or a gestational weight of one kilogram (Blencowe et al. 2016); in the UK the borderline of 24 weeks is used, whilst in Australia and the United States babies born lifeless from 20 weeks are classed as stillborn. To enable the comparison of figures the same definition would need to be adopted globally.

But when trying to answer the question of why it has been possible for the world to fail to adequately address the issue of stillbirth, I think the answer is that stillbirth is still a significant taboo. As a result, many people who have experienced a stillbirth feel stigmatised, which means they are less likely to speak up and demand changes in attitudes and care standards. The Lancet series in 2011 and 2016 outlined the need to address and reduce stillbirth stigma (Horton and Samarasekera 2016; Goldenberg et al. 2011), but the nature of stillbirth stigma is still poorly understood, and measures aimed at reducing it are hard to assess. In 2019 Pollock et al. proposed the use of a new stillbirth stigma scale of twenty validated questions (Pollock et al. 2019); it remains to be seen whether this scale will be widely adopted or not, but it seems a good start.

In terms of breaking the taboo on stillbirth little real progress seems to have been made in the past ten years, though people are increasingly sharing their experiences on social media and other public platforms. Stillbirth support organisations such as Sands are generally able to reach those affected directly by stillbirth, but less able to communicate with a wider public. Art is particularly well placed to reach a general audience because it is usually presented in public spaces which are often (but not always) free to enter. However, to date the general taboo on stillbirth means that this is an under-represented topic within most national and international art scenes.

As an artist I have tried to make work about stillbirth since it happened to me in 2010 when my first daughter was stillborn after 41.5 weeks of pregnancy. In an otherwise uncomplicated pregnancy I had two extra growth scans in week 32 and week 36 of the pregnancy; in week 37 I was told that external measurements showed a growth spurt and that further scans were therefore unnecessary. My antenatal care providers continued taking external measurements until just beyond week 41 when my daughter’s heart stopped beating. When she was born a few days later she was 52 cm tall and very skinny: it was obvious that she had suffered from growth restriction. It became clear that the external measurements had been entirely inadequate (further exacerbated by travelling between two different countries with slightly different measuring systems).

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I made five porcelain uteruses in 2010, each printed with different imagery. After that I had a period of a few years where I made very little art, partially due to finishing my PhD and starting a lecturing job, and partially due to suffering from depression following the stillbirth. With the exception of Porcelain Uterus: Poem for Elvira, I was better able to express these feelings after sitting with them for several years, as you can see in Tree of Sadness made in 2013.

In the ten years following my daughter’s stillbirth I made a substantial body of work on the themes of stillbirth and grief. The nature of the works has changed over time with the later works presenting stillbirth as a societal problem, rather than solely a personal one.

A number of these works were brought together in the Still Born Artist’s Book published in 2018 (and available here and here). The book includes the responses of eight poets to my artworks, my own text on the work, and an essay by stillbirth specialist and obstetrician Professor Alexander Heazell of Tommy’s Stillbirth Research Centre at the University of Manchester.

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The book aims to lift some of the taboos on this delicate subject, using art and poetry to explore the emotions that arise in the days, months and years that follow a stillbirth. Some of the poets have their own personal experience of stillbirth, miscarriage or the death of a baby later in life, and some have witnessed the loss and pain of stillbirth in others.

The painting Each Egg a World, made in 2017, contains 44,061 dots that together create patterns of human female egg cells inside a larger egg shape. Each dot represents a stillbirth. The painting tries to humanize large numbers by revealing the personal stories behind each of these deaths. The online version of the artwork realized this year during lockdown allows people to select and name one of the dots after their stillborn baby: participant(s) are invited to write a brief anonymous description of their experience of stillbirth. A named dot will turn red and once the statement has been reviewed it will be readable online when hovering over the named dot (or by clicking on it when using a phone or tablet).

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Anybody, including those who have not directly experienced stillbirth, can read the statements and offer feedback on the work. I hope that the artwork will help to break the taboo on stillbirth and make people feel slightly better equipped with understanding when they come across a stillbirth in their own surroundings. Some 156 people have so far named a dot and submitted their personal statements to the artwork. As well as being available online here, the artwork can currently be seen at the Rainbow Clinic in Manchester, where people who are pregnant after a stillbirth receive enhanced antenatal care. A wider exhibition of the Still Born artworks will be exhibited at the Idea Store Whitechapel in 2020 and the City Library in Newcastle upon Tyne in spring 2021.

Evaluation

The feedback section of Each Egg a World Online asks two questions that are slightly different for people who have experienced stillbirth and people who haven’t. The first group is asked 1) “Do you think an artwork like this can help break the taboo on stillbirth?” and 2) “Can a sense of community be achieved from taking part in this artwork?” At the time of writing, 59 people in the first group had completed the survey: of those, 91.5 % said that the artwork can help break the taboo on stillbirth and 100 % agreed that a sense of community is achieved from the online artwork.

The feedback questions for people without first-hand experience of stillbirth are the same except for the second question which reads: 2) Have you learned anything from exploring this artwork? This was completed by 10 people with 100% agreeing that the artwork can help break the taboo on stillbirth and 100% having learned something from the artwork. One woman responded:

I once worked closely with three young women who were all expecting their first child at roughly the same time. Two gave birth to a healthy baby, a son and daughter respectively. The third suffered a stillbirth. It was very difficult to know what to say in the circumstances – the joy of two women and the devastation of the third. She left the company, moved away and eventually had a healthy child. Life moved on. The need to say anything seemed to have been overtaken by events. I think through this artwork and the testimonies of others I now understand what she was going through and have a better idea of what I could have/should have said.”

A wider evaluation is planned where we will use the stillbirth-stigma scale by Pollock et al. to measure the effectiveness of Each Egg a World online in lowering stillbirth stigma, but the results from the feedback obtained so far indicate that art can indeed be a highly effective tool in lowering the taboo surrounding stillbirth. This artwork has the direct potential to help break the taboo but more investment would be needed to reach a wider global audience. You can help the project by buying the Still Born book or one of the high quality reproductions of the artworks here.

The Still Born project has been funded by the Arts Council England, Wellcome Trust, the University of Manchester, GX projects (ERDF funding), the National Institute for Health Research, crowdfunding and the Alnmouth Arts Festival committee. Further support has been received from Sands, Tommy’s, Northern Print, New Writing North, Newcastle City Library, the Idea Store Whitechapel and Digitalab. Special thanks to Alexander Heazell who helped to make this project possible.

*****

Dr Adinda van ’t Klooster is an international artist with a track record since the 1990s. Her works use a range of media and have explored topics including stillbirth, grief, (in)fertility, the role of technology in reproduction and the expression of emotion in art and music. Website: http://www.adindavantklooster.com/works.html

The Still Born project can be found at: https://www.stillbornproject.org.uk/.

References:

Blencowe, H., Cousens, S., Jassir, F.B., et al. 2016. “National, regional and worldwide estimates of stillbirth rates in 2015, with trends from 2000: a systematic Analysis.” The Lancet Global Health 4 (2): 98-108.

Frøen J.F., Cacciatore J.,  McClure, E.M., et al. 2011. “Stillbirths: why they matter.”  The Lancet 377 (9774): 1353-1366.

Goldenberg R.L., Mcclure E.M., Bhutta Z.A., Belizan J.M., Reddy U.M., Rubens C.E., Mabeya H., Flenday V., Darmstadt G.L. 2011. “Stillbirths: the vision for 2020”. The Lancet 377 (9779): 1798-805

Horton R., Samarasekera U. 2016. “Stillbirths: ending an epidemic of grief.” The Lancet 387 (10018): 515-16.

Lawn, J.E., Blencowe, H., Waiswa, P., et al. 2016. “Stillbirths: rates, risk factors, and acceleration towards 2030.” The Lancet 387: 587–603

The Lancet, 2016. “Ending Preventable Stillbirths: An Executive Summary for The Lancet’s Series.”https://www.thelancet.com/pb/assets/raw/Lancet/stories/series/stillbirths2016-exec-summ.pdf. Accessed 23 September 2020.

Pollock, D., Esterman, A., Pearson, E. 2019. “Measuring the silence: development and initial psychometric testing of the Stillbirth-stigma scale.” Evidence Based Midwifery 17 (3): 77-83.

World Health Organisation, 2020, <online> available at: https://www.who.int/maternal_child_adolescent/epidemiology/stillbirth/en/. Accessed 23 September 2020.

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