TRANSCRIPT
“So by the time we got in there, she even said to me 'oh you couldn't have just held out and waited?'."
“I gave birth at 3am in the shower, alone, with absolutely no support. No phone number to call, no one to ask if it was normal.”
More than one in three women in Australia have experienced birth trauma, and one in ten say they have experienced obstetric violence.
Birth trauma is complex and multifaceted but what does it actually mean?
And is the issue being addressed in Australia?
In this third episode of Hysterical, we try to answer some of these questions.
Dr Hazel Keedle is a Senior Lecturer in Midwifery at the Western Sydney University and has more than two decades of clinician experience as a nurse and midwife.
She says there isn't a single standardised definition of birth trauma.
“I think the definition that really fits best is Beck - who did some beautiful research on this, and this was one of the titles of her papers - it's in the eye of the beholder. Birth trauma is what women say it is. But I do think we need a little bit more these days, so I see it as an umbrella term which can encompass a lot of different experiences under that umbrella. That can include obstetric violence, that can be part of the birth trauma, but that can also be things like fearing for your own life, fearing for your baby's life, having some wounds - such as perineal trauma, or caesarean scar trauma, down to the physical side of it, the emotional side. It can be pretty much anything under that umbrella, and the woman can experience everything in the umbrella, or maybe just one or two things. and that's enough for the woman to feel it was a traumatic experience.”
Australia has never conducted a national inquiry into birth trauma but New South Wales was the first state in the world to do so.
The report following this inquiry released 43 recommendations at the end of May, centring around trauma-informed care and continuity of care for mothers.
First Nations woman Sam Hall is one of many women in Australia who has been left traumatised from her birth experience.
She lives in Queensland, and gave birth to her son Koah two years ago.
“I had a lot of issues with my midwives and I dunno if it was just because I was a first-time mother, Aboriginal, I don't know what it was. And then the next day I went into labour and something was wrong straight away, it was all in my back. So that was about 7pm and then about 2am I kind of couldn't handle it any more. So I tried to call my midwife to see if I could at least just go in and get checked and get some pain relief. And she told me just have some Panadol and have a shower and go to bed and just wait until in the morning. So I think about 8 o'clock we called again to go in and you could just tell she wasn't happy about it, she was kind of annoyed that I didn't just wait. So by the time we got in there, she even said to me like, 'oh, you couldn't have just held out and waited?'“
Sam had been booked in to get induced on the Sunday evening but her intense back pain signalled something was wrong.
One of the student hospital midwives picked up that Sam's baby was in distress in the morning around 10am, and her son wasn't born until 6pm.
“And that was one of my biggest fears that I had even gone to the head of obstetrics at my hospital and said, I don't want him to be transferred away from me and may not be able to go with him because it's such a ingrained thing I think in Indigenous women and mothers of that fear of having a child taken away. So he got transferred about midnight and then I got transferred the next day at 3pm and because of the therapy he was having, we didn't even get to hold him for about four days.”
Every major organ in Sam's baby was affected by meconium aspiration.
Sam says Koah returned home after nearly a month, and was then on oxygen at home for about six months.
This story is frightening but not isolated.
Amy Dawes is the founder of the Australasian Birth Trauma Association - one of the stakeholders which made a submission to this inquiry.
Like many of the women she speaks to on a daily basis, Amy has her own story of birth trauma.
She had a forceps delivery when she gave birth to her first child in 2013, despite having no information about what this involved.
“But I knew absolutely nothing, nothing of the risks associated with forceps delivery, and subsequently she was delivered by forceps, and at the time I had quite an extensive bleed, I required a blood transfusion, and I also sustained a diagnosed third-degree tear. But everyone told me I got the birth I wanted, because at the time I was really quite firm that I wanted a vaginal birth. And although I couldn't get out of bed for the initial five days because I was catheterised, and although I was wheeled outside on a wheelchair after five days to get some fresh air, being a first time mum I just didn't know that that wasn't normal.”
Amy initially suffered from faecal incontinence and other issues, but kept faith that things would steadily improve.
This was not the case.
Sixteen months post-partum Amy was diagnosed with an avulsion - which is where the pelvic floor has detached from the bone - after feeling a deep dragging sensation during her first run since giving birth.
“So I walked out of that appointment feeling like I was an 80 year old woman. I was told to get out of bed a particular way, to go to the loo a particular way. And my wellbeing as you can imagine just completely plummeted. Because the life that I had imagined with my child, being a very healthy fit mum, was completely ripped away from me. But not only that I couldn't tend to her needs, by picking her up. And so I struggled really massively, I went to a very dark place. Because I think for a long time, particularly for pelvic organ prolapse, which is just one element of birth-related trauma, has just been normalised for so long. It's typically perceived as an old lady's problem, however, that is just not the reality.”
And yet, even as a personal trainer, Amy had never heard of this birth-related risk before.
The Australasian Birth Trauma Association called for a number of recommendations in the inquiry, including ongoing data collection and research into women and their partner's birthing experiences, a full commitment to informed consent, funding for education of all clinicians involved directly and indirectly in childbirth, as well as the development of national guidelines into post-natal care.
In looking across many of the inquiry's recommendations, trauma-informed care is pivoted as a key solution, with many women carrying pre-existing trauma from experiences of domestic or sexual violence and other forms of abuse.
“I think of Hannah, who's one of our advocates. She bravely shared a story of her birth experience where she was given an epidural (anaesthetic), and so she was immobilised during her birth and nobody was telling her what was happening. They basically performed an instrumental delivery and she started to have this disassociation. She was triggered by the smells in the room, and she was very uncomfortable. The surgeon kept telling her to stop, move, to calm down, but nobody was actually telling her what was happening to her and she couldn't understand. And then she got another waft of the smell and had a flashback of being sexually assaulted by her swim coach. Most women, birthing people, are not going to recognise that their trauma could potentially impact their labour and birth experience because we don't know what we don't know, and the perception of pregnancy and birth, and it's supposed to be the happiest day of our lives.”
Dr Hazel Keedle and her colleagues conducted the largest Australian study into birth trauma, and one of the largest in the world in 2021 - known as the Birth Experience Study.
It followed a documentary film, conducting a survey in co-design with various consumers, asking over 130 questions across pregnancy to post-natal and was live for about nine months, and was available in English and several other languages.
They ended up with 8,804 completed surveys - making it the largest maternity experiences survey ever done in Australia, and one of the largest in the world.
One in three women reported experiencing birth trauma, and one in 10 had suffered obstetric violence - a term not officially recognised in Australian legislation.
Dr Keedle welcomed many of the inquiry's recommendations, including that all women have access to continuity-of-care models which were identified as the 'gold standard' of care.
“Women want culturally sensitive, trauma-informed, continuity of care led by a midwife. I strongly recommend that the New South Wales government appoints a chief midwife and expands access to midwifery group practice, and privately practising midwives. I hope that the New South Wales government acts on these recommendations as they will result in less women experiencing birth trauma and obstetric violence.”
In her research, speaking to thousands of Australian women from diverse backgrounds, Dr Keedle and her colleagues found that these issues were often exacerbated for First Nations women, women from culturally and linguistically diverse backgrounds, young women, and other minority groups.
In fact, 37 per cent of First Nations women reported experiences of birth trauma compared to 28 per cent reported by the rest of the population.
“So we looked at First Nations women, we looked at culturally and linguistically diverse women and young mums. And we could see they had much higher birth trauma rates and higher obstetric violence rates. Certainly for our First Nations women, there will be the impact of systemic racism and how that impacts their experience. And certainly some of those comments look like that. They're basically biases, or unconscious biases, that healthcare providers have that have an impact on their experience.”
Sam was part of an Aboriginal midwife program attached to her hospital, which she said aimed to assist Indigenous families from her area.
According to the Aboriginal Health and Medical Research Council of New South Wales, which made a submission to the inquiry, only 1.3 per cent of midwifes are Indigenous Australian, and yet First Nations people make up 3 per cent of the population.
Sam says she can't be certain which of her midwives were Indigenous, but says the one student midwife who she knew was Indigenous was the only midwife she felt comfortable with.
“I had a student midwife for a little while there who was Indigenous and she made me feel better than any of the other midwives I'd had to deal with, maybe because she understood more, or she didn't make me feel silly if I had any concerns, and that's how the other midwives made me feel. And it took me nearly two years to fall pregnant, like the whole pregnancy I was kind of anxious already. He was normally quite an active baby and as soon as I could feel he wasn't moving I would freak out. And I went in there one day for it and my midwife, so this midwife kind of snapped at me and just said look what is going on, why are you here? Do you know someone who has had issues or lost a baby? Kind of making out that I was just I don't know imagining things or trying to stress myself out or worry myself. It was really weird, like she didn't believe I couldn't feel him moving around and that I was just anxious and paranoid. There was a lot of that going on.”
Sam says she's still angry and saddened by her experience.
“Even when I had gone into labour, I was scared to ring them because I knew they'd just brush it off. And even after the birth when I had to go and have the meeting with the hospital, I kept putting that off for months and months and months, because I kept thinking they're just going to brush it off, like I just won't be taken seriously. It felt like a lot of that. And it just made me want, like I wasn't taken seriously, and then my son nearly died because I wasn't taken seriously. So still a lot of anger with it all.”
The idea of informed consent is one that mothers and advocates alike are calling for in response to these experiences of dismissal.
Dr Keedle explains what women mean when they call for informed consent.
“And that's the biggest factor - feeling out of control. And not being able to give full and informed consent contributes to feeling out of control. If you are not given all the information you need to make the decision to give full consent, then afterwards you can look back and feel that you were maybe duped or coerced into making a decision. Unfortunately, across our maternity services there's a lot of use of coercion when it comes to pregnant women. And it's different from other areas of health for the pure fact that there are two lives involved. But from the legal framework, while it is the woman's decisions that take precedence over everything, it's her body, and the baby although being alive does not have those rights until they are born - there's often a lot of coercion used like if you don't do this there will be a poor outcome. And that poor outcome usually being something wrong with your baby.”
But not everyone agrees with the term obstetric violence, or even that New South Wales needed a birth trauma inquiry in the first place.
Dr Jenny King is a Urogynecologist at Westmead Hospital in Sydney, and opposed many of the perspectives being brought forward at the inquiry.
“Look, I'd have to say I was fairly floored when I first heard about it. For a start to call it, obstetric violence is an incredibly emotive term, isn't it? And there's an implication of intent in it that I find seriously offensive, and I suppose someone else would say yes, but you haven't been on the receiving end. There are certainly experiences that I'm sure people weren't happy with. I'm equally sure that none of those, you know, that few of them were intended. I think a lot of them were due to unrealistic expectations.”
Dr King completely rejects the term obstetric violence and is also reluctant to describe experiences as birth trauma.
However, having worked in different areas of obstetrics for over 30 years, however, she does acknowledge that there are many gaps in obstetric care that are a result of under-resourcing.
“I suppose what I really, really think is there's so much about obstetric care that we are not providing well and it's a resources issue. So many of those women in the clinic don't get the education and the time spent with them that they should, and that can certainly contribute to an unhappy experience, if you don't know what's going on, that's not what you expected. But we're not even looking after basic needs for a lot of those people. They come in, we make sure basically the baby's still moving, they don't have blood pressure, and that's about it. There's no time to talk about all the other things. And New South Wales Health, along with a whole lot of other governments, lays down all these requirements that you're going to talk about every conceivable thing that might happen, and you're going to do that in a busy antenatal clinic. It's not going to happen. It doesn't happen. There are not the staff, there are not the resources. And I think that's the biggest issue.”
Dr King has been criticised for comments she made in the inquiry:
SUUVAL: "In your opening statement, you talked about the expectations that women have and I wondered, I'd invite you to expand further on that and how we as a committee can consider recommendations for this inquiry that will benefit the health system and ultimately women."
KING: "It's hard, isn't it? Because I'm old now, and so I think everyone under about 30 is a wimp and has to have 'me time' which was never a thing. So I'm probably a little bit tough, but it's that whole thing of thinking you can control the birth process and it's a shock to the system when you can't. And it's that attitude of, well, having this baby is not going to change how I live my life. And I think, why are you having this baby? But there's also that whole expectation that you'll be able to manage the situation. And in fact, labour is a very cruel midwife, really. You have to accept that unexpected things will happen.”
That was Dr Jenny King, responding to a question by New South Wales Labor MP Emily Suuval, who is a member of the inquiry.
Amy Dawes was shocked by Dr King's comments.
“On a personal level, women to women, I find it baffling that women can have such a lack of understanding of their words and their intent behind it. I have lost count of the number of women that have said, I thought I was prepared for birth. I just did not know that this could happen. Why didn't they know? Because there's actually nowhere to find that information. And I also think there's, for me that kind of narrative is very much victim-blaming. It's saying, you didn't do right. You shouldn't have believed this. You should have known better.”
She went on to describe how the physical and psychological impacts of birth trauma are often intertwined but too often left unaddressed, as mothers simply try to get through the first few months or years raising their child.
But too often women fail to seek appropriate mental health care, ignoring early warning signs that could have prevented post-traumatic stress disorders from developing.
“Because as it stands today in 2024, not a single state or territory has any kind of guidelines for how we deliver postnatal care for women. And do you know how that plays out? Women don't access support. Women muddle through with trauma, with PTSD, with mental health challenges while raising the next generation. But again, we just accept our fate. But the reality is how does that play out with the parent-infant bond? How does that play out in her ability to parent? And how does that play out eventually for maybe returning to work or having further children? We see all of these challenges.”
For people with a disability, trauma-informed care and informed consent couldn't be more vital.
Dr Namira Williams is the CEO of Disability Maternity Care, an organisation inspired from her lived experience as a mother to a daughter with an intellectual disability and her work as a midwife and nurse for over 30 years.
“That assumption that if you have a disability, you don't have sex, and therefore you're not going to conceive or become a parent or choose to become a parent. I guess from my perspective, because I have a daughter with a disability, from my perspective, even I experienced that in terms of other people, not necessarily saying it overtly, but there was the insinuation. Why would you support your daughter having a child when she has a disability? It's almost like, well, if you can't look after yourself, how could you possibly hope to look after a baby? And that's not uncommon to hear that from women or that there's coercion either for women with an intellectual disability to actually terminate their pregnancy based on that assumption that they can't care for their baby, or that it might be a woman who has a genetic condition. And so there's often assumptions made and comments made around, well why would you want to potentially pass that genetic condition onto your baby, that's irresponsible.”
Disability Maternity Care provided a submission to the birth trauma inquiry, calling for greater commitment to informed consent and information accessibility for people with a disability, allocating greater time and funding to appointments for parents with additional needs, and a stronger recognition of the pre-existing trauma and stigmatisation many people with a disability bring to their birthing experience.
Recommendations did include the need for further training for health staff around disabilities.
She says the Council for Intellectual Disabilities New South Wales has a great program around supported decision-making, to help providers understand how to support someone with an intellectual disability make decisions better.
“So if we are thinking about women with other learning disabilities or intellectual disabilities or autism, actually providing that information in an accessible format for women who have a visual impairment. I've never seen information provided in braille within hospitals. So informed consent means actually providing information in a way that the person can understand, ensuring that they actually understand that information, giving them time to process that information. Different people process information at different speeds. And obviously in maternity situations there are life and death situations where decisions have to be made very quickly. But I think it's also about the how of those decisions being made and whether the person's actually feeling that they contribute to that decision-making. So often I think they're given the information, but it's not checked in that they actually understand the information, whether they have appropriate questions. So informed consent is not really happening for that particular group of parents.”
The same trauma-informed care can be applied to understand the intergenerational trauma often felt for First Nations people around child removal.
Sam says she soon understood this as part of her intense anxiety when her son was transferred to a different hospital for specialised care.
“It wasn't until I sat down with my mum one day and we were talking about it, and she explained it's like an ingrained thing that Indigenous women have and mothers have, and I think any mother would be scared of losing their children. But the Indigenous women, it's ingrained in us from having children remove so long and it's just, sorry. It's hard to, sorry. Yeah. I think it's just any possible chance that we could have the children taken away is always on our minds, I think.”
Miscarriage, in particular early pregnancy loss, is also often excluded in conversations around birth trauma.
Samantha Payne has survived three miscarriages and is founder of Pink Elephants Support - an organisation she established eight years ago to support people experiencing early pregnancy loss.
“After my second miscarriage, that was incredibly traumatic, that was what they call a natural miscarriage, which I describe it as anything other. I knew the baby had no heartbeat and that I'd started to miscarry naturally. I was given no useful advice. I was told it would be a heavy period. I gave birth at 3am in the shower alone with absolutely no support, no phone number to call, no one to ask what was normal, huge volume of blood. I didn't know what was normal or not. I then presented early at the hospital the next morning because I was terrified. And again, that was incredibly traumatic again with a lack of validation and support at all, and was told it's normal, you can go home now. It's all happened. Making decisions as to whether to keep the remains of your baby or not, or whether to take them to hospital for further testing. Again, no advice given on what's normal, what's not. So that was very, very traumatic.”
Ms Payne had experienced a loss prior to this one, and then a subsequent loss during the Covid-19 pandemic - each different from the other.
But all shared one common theme - a complete lack of support from the health system.
She was only directed to support after she asked following her second loss, but she says it was a later term loss organisation which she didn't connect with at the time.
“But I think what you find happens with miscarriage is that we don't label it as birth trauma because it's not even seen as birth. It's seen as a process that is medically managed to remove a foetus, is often what we're told. And for many, it's not a foetus, it's an embryo. So the language that we are given for the experience of early pregnancy loss disenfranchises it as birth. And so it can be incredibly difficult for our community to feel a connection to birth trauma. But after eight years of working in this space, I can definitely see the lines.”
Ms Payne says this lack of support is a critical problem as women are then more likely to develop poor mental health outcomes and are at greater risk of suicide.
She says volunteers at Pink Elephants Support fill a crucial gap in care, which Ms Payne knows she would have found comforting following her miscarriages.
“I can speak of one lady, Cheryl. Her losses were many, many years ago. She has grandchildren now, but she still chooses to give back to Pink Elephants community because the way that she was treated at that time through her losses was incredibly traumatic, there was no validation, no empathy, no support. And it stayed with her for such a long time that now she's chosen that actually one of the ways that she can actually process her own grief and move forward is to provide this support to others. So I guess that we get that incredible privilege now of changing the narrative.”
For Sam, and many others, it comes down to safety.
In May’s Federal,budget, the government invested $56.5 million to implement the remaining recommendations from the M-B-S Review Taskforce - Participating Midwives Report, saying it looked to "promote flexible, high quality and tailored maternity care".
They also invested $6.7 million over two years from 2024 for strategies in participating maternity services and First Nations communities to prevent preterm and early term birth, and monitoring the National Stillbirth Action and Implementation Plan.
Sam says it's vital to attract more Indigenous Australian women into midwifery and offer cultural training to all health practitioners involved in obstetrics.
“I would've felt safer and I feel like they would be there to support you and push more for what the mother needs in that moment. They would understand more. I think it's a lot about comfort and safety for a lot of these mothers, and having someone who understands them and their culture by their side to advocate for them, I think is really important.”
In our next episode of 'Hysterical', we look at barriers to reproductive and sexual health care in Australia.
Who's left out of the conversation, and is Australia ready to address issues of stigma and exclusion in this area?
