A CRUCIAL step in tackling preventable stillbirth may be for clinicians to say the word, preferably in a language native to the mother and in a culturally appropriate way.

Professor David Ellwood, Professor of Obstetrics and Gynaecology at Griffith University and Co-Director of the Stillbirth Centre for Research Excellence (Stillbirth CRE), said health professionals were still reluctant to use the word “stillbirth” when talking to patients.

“When clinicians are saying to patients ‘perhaps it’s time for your pregnancy to be over’, they don’t continue the conversation by saying ‘because I am concerned that your baby might die if we leave things for another week’,” he said.

“[Stillbirth] is taboo, it’s confronting, and we are not good at getting across concepts of risk when it’s a very infrequent occurrence. Stillbirth is a very infrequent occurrence, but it’s devastating.”

Professor Ellwood was commenting on a Perspective published in the MJA that highlights the relatively higher rates of preventable stillbirths among women from migrant and refugee backgrounds in Australia.

Associate Professor Jane Yelland, Senior Research Fellow at the Intergenerational Health Research Group at the Murdoch Children’s Research Institute, and colleagues, wrote in the MJA that there were marked socio-economic disparities in stillbirth rates in Australia and other high income countries.

“Aboriginal and Torres Strait Islander people and people from some low and middle income countries, particularly those coming as humanitarian entrants to Australia, are among the most likely to experience stillbirth,” the authors wrote.

“Public health attention to this devastating but low visibility issue is long overdue.”

The Perspectiv comes after WA research, published in the MJA in 2018, found that immigrants of African or Indian background appeared to be at greater risk of ante- or intrapartum stillbirth in that state.

The reasons for these disparities were multifactorial, the MJA Perspective authors wrote. They noted that there was emerging evidence that difference in gestational length and fetal growth restriction may explain a proportion of stillbirths in women of South Asian background. Also, they wrote, barriers to access and engagement with antenatal care, limited health literacy as well as complex social determinants of health, and the cumulative impact of stressful life events and social disadvantage are likely to contribute to this excess risk.

The authors called for engagement from both migrant communities and health professionals in designing health care reform to end preventable stillbirth.

Professor Ellwood welcomed the “excellent” article and said it was important to address the particular challenges for women from migrant and refugee backgrounds.

“People find this to be a challenging issue when they are talking in their own language, but you can imagine that it’s even more challenging when they are talking through an interpreter or talking to someone where English is not their first language,” he said.

“Getting the message across in a culturally appropriate way is absolutely essential and as is ensuring that people actually understand.”

Associate Professor Jane Warland, from the University of South Australia’s School of Nursing and Midwifery, said it was high time that we tackled the taboos around discussing stillbirth.

“Taboos exist around discussing stillbirth risk with all women not only those from culturally and linguistically diverse (CALD) backgrounds. As the [MJA] authors point out, it is particularly challenging to discuss risks with women of CALD backgrounds and this is especially true if the maternity care provider is not in the habit of discussing risk with pregnant women in general,” she said.

In an exclusive InSight+ podcast, Associate Professor Yelland said although stillbirth was a rare event, it was important to remember that around 2000 babies were stillborn each year in Australia.

“That’s a tragedy for families, a tragedy for health care providers and the stillbirth rate hasn’t changed over many years in Australia, despite a very good health system here,” she said.

“There are … major challenges for migrant women of non-English speaking background navigating Australian health care, and that has been recognised for decades. Unfortunately, there is no evidence of improvement in migrant women’s experience of antenatal care in population-based surveys undertaken in Victoria and SA.”

Professor Vicki Flenady, also a co-director of the Stillbirth CRE, said system reform and continuity of care were critical in tackling preventable stillbirth in refugee and migrant populations.

“As the [MJA authors] point out, we need system change,” Professor Flenady said. “We need to look at how we deliver antenatal care to make sure that women want to come.”

She said providing culturally safe antenatal environments and continuity of care – where women of culturally and linguistically diverse backgrounds could build trust and rapport with health care professionals – was critical in breaking down the barriers to care.

Professor Flenady said for many years the Stillbirth CRE has been translating its resources into various languages. For instance, its fetal movement brochure was now available in 18 languages from Arabic, Bengali and Burmese, through to Tongan, Thai and Vietnamese.

In response to last year’s Senate Select Committee on Stillbirth Research and Education, the Federal Government announced  a $7.2 million funding package to help reduce Australia’s stillbirth rate.

Professor Flenady said the Stillbirth CRE was leading the development of a Safe Baby Bundle – modelled on a successful UK program to target evidence—practice gaps in stillbirth prevention.  “We hope to engage with culturally and linguistically diverse [CALD] populations in a co-design process where we meet and talk to women and develop the resources that they need to understand the risks and key management strategies to reduce the risk of stillbirth,” Professor Flenady said.

Modelled on a successful UK program, the Safe Baby Bundle will target areas of substandard care.

“We are rolling out educational programs for clinicians and related resources for women, including a mobile phone app. We hope to engage with culturally and linguistically diverse populations in a codesign process where we meet and talk to women and develop the resources that they need to understand the risks and key management strategies to reduce the risk of stillbirth,” Professor Flenady said.

The University of SA’s Associate Professor Warland said it was important to address preventable stillbirths in all populations in Australia. She said campaigns developed as a result of last year’s federal funding needed to be culturally sensitive to all Australians.

“Most pregnant mums are not aware of the simple things they can be doing to reduce their risk, such as getting to know their unborn baby and immediately reporting changes in their baby’s movements, going to sleep on their side from 28 weeks, and trusting their maternal instincts,” Associate Professor Warland said. “This important information needs to be available to all Australian women whatever their culture or language.”


Poll

We don't talk about stillbirth enough
  • Strongly agree (71%, 29 Votes)
  • Agree (24%, 10 Votes)
  • Neutral (5%, 2 Votes)
  • Disagree (0%, 0 Votes)
  • Strongly disagree (0%, 0 Votes)

Total Voters: 41

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10 thoughts on “Stillbirth taboo: start by saying the word

  1. Jules Black says:

    Dr Emanuel Lewis, pædiatric psychiatrist in London coined a very powerful phrase in his writings about stillbirth, “Born into a graveyard”.

  2. Daniel Claughton says:

    Interesting how they talk about ‘getting to know your baby’ from 28 weeks when some states are allowing terminations up to birth. Also interesting how this article talks about the unborn ‘baby’, but an article on abortion will never use the ‘b’ word.

  3. Geetha Augustine says:

    Yes I agree. But as u mentioned everywhere migrants& refugees,I am a nurse migrated here 13 yrs ago. Few of my friends or community members those who are health professionals including doctors had syillbirth in Australia. Most of them were post term, waited 42 weeks +gestation. When they got induced too late. Those who got the baby alive who was on ventilator for more than a month. So why this system not changed? Why the induction not happen in 40+weeks? As u mentioned the gestational growth may stop on that time for these ethiniciries. Also pls pls provide at least one year training of general nursing for midwives. The only learning midwifery for 3 years. They hav no idea hw to find out a deteriorating pt other than the gynaec symptoms. It’s my personal experience. I might be in heaven this time if there was not a doctor one month ago in my post partum in the hospital. Asking I lost my friend who was 20 weeks pregnant in last year.The clinicians predominantly midwives couldn’t realise that she was dying from her symptoms. So 2 poor children live now without their mum. My strong recommendation is pls add basic nursing to their curriculum. That would save lots of lives including stillbirths.

  4. Murray Barrell says:

    Not to have a discussion around the topic of stillbirth in obstetric practice is analogous to not discussing a palliative care option to a dying patient and their family.

  5. Anonymous says:

    To blame the woman for ‘not getting to know her baby’ from 28 weeks is outrageous. My baby died at 30 weeks and was monitored closely from the 20-week scan. Until 12 weeks I’d had an anxious pregnancy due to a previous miscarriage. When given a ‘green light’ at the 12 week scan, I had 8 wonderful weeks of expecting to become a mother which was then stolen from me by 10 weeks of anxiety and eventual heartbreak! Ive since had 10 years of barely talking about it because no one wants to – even I don’t want to. I strongly agree that stillbirth should not be the taboo that it is. I know all cases are different – but please have some respect: how dare you insult me, my husband and the memory of our dead child by suggesting our tragedy could have been prevented by me doing ‘simple things’ like ‘getting to know my baby’ from 28 weeks. You have no idea! ‘Apps’ and ‘co-design’ are the buzzwords of current research – they are not a panacea – and your assumption is there in black & white, that women need education, not that they need clinicians and healthcare systems to provide better screening & care during a time of great uncertainty and vulnerability. Just do what is easy, not what matters!

  6. Anonymous says:

    Indeed Daniel (#2), the moral status of the baby changes depending on whether it is ‘wanted’ or ‘unwanted’.
    There is a shutter that can be drawn in the mind to deal with this.

  7. Anonymous says:

    Educating women re Trusting your maternal instincts needs to be backed up with education for midwives to appropriately respond to women. I have personally experienced and heard many stories of mothers calling the hospital because of decreased baby movement or other issues and being told to calm down, ‘take a couple of panadol’ and not come to the hospital to be reviewed. Understanding resources are stretched, there must be a way women can be supported to come for a simple trace to check the baby (‘you know your body, come in and we will do a quick check’), therefore identifying issues that may lead to stillbirth earlier.

  8. A/ Prof Jane Warland says:

    Responding to “anonymous June 10 2 5.08”

    I feel so very sorry that my words upset you. I did not say , nor would I ever, that stillbirth can be PREVENTED with the “simple” measures that I mentioned. Neither would I ever suggest that a woman be “blamed” for “not getting to know her baby” nor that a stillbirth could be prevented if she did, I agree that saying such a thing would be outrageous and insulting and it is certainly not what I said
    I know from personal experience (My baby Emma was stillborn at 38 weeks 26 years ago) that no matter what you do, that stillbirth can still happen. BUT we also know that women can REDUCE THEIR RISK of stillbirth if they get to know their individual baby’s pattern of movements and immediately report a change. Research from other countries (mentioned in this article by Prof Flenady and Ellwood) tells us that when maternity care providers and women talk to each other about risk and take steps to reduce risk by doing things like monitoring their baby’s movmeents and going to sleep on your side from 28 weeks that the stillbirth rate can drop.
    As someone who has dedicated more than 25 years of my life (since my daughters death) to educating health care providers as well as conducting research to improve the healthcare system to provide better screening & care “during a time of great uncertainty and vulnerability” I can say that recently we have had very exciting break throughs in community understanding of stillbirth both nationally and internationally and I have every confidence that the work that is being done now in this country will save lives and REDUCE the number of stillbirths, saving SOME families the heartache and heart break you and I have endured.

  9. Anonymous says:

    Thank you for your response. I am very sorry for your loss and thank you for your research and efforts to minimise the risk of stillbirth for other prospective parents.
    I agree with Anonymous June 12 that health professionals can be too dismissive of a woman’s instincts, which can make us vulnerable to trying to ignore them for fear of seeming neurotic. Women need to feel confident to trust their instincts and confident that they will be respected when they call upon their health professionals.

  10. Anonymous says:

    To A/Prof Jane Warland and “anonymous June 10 2 5.08”, my heart goes out to you for this awful loss. Thanks for the work you are doing. To comment from the point of view of someone who has had that advice given to them (“monitor foetal movements, get to know your baby”), but not experienced the loss – of course it needs to be done and does reduce risk, but it is the most nightmarish advice to receive. So – you are meant to not sleep? Or wake every hour, count 6 kicks, and go back to sleep? What if you get distracted for a few hours?
    I find it extraordinary that in the era of modern medicine and technology, where social media algorithms know what I am thinking before I do, and the fridge could tell me what it needed if I wanted it to, that technology in this area, a far more important part of human life, is so far behind. How far away is wearable or device-associated technology that can provide better information?

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