10 | Helen
“I cannot verbalise what that period did to me - it felt like I was living with a bomb in my tummy and the bomb could go off at any point. I couldn’t see the countdown. I was scared to sneeze in case I set the bomb off, so it was really where my experience with trauma came into play and unfortunately, because health care clinicians don’t receive formal training in psychological trauma, I didn’t recognise what was going on. So I normalised and dismissed it. And it did an awful lot of damage.”
When Helen, a midwife and academic, describes her mental health in pregnancy and postpartum, she uses the word ‘blindsided’.
Despite her expertise, Helen was confronted by post-traumatic stress disorder following two traumatic pregnancies, a NICU admission, baby loss, grief, and the continued uncertainties of IVF. As a health clinician, she was also staggered by the prevalence and general lack of awareness of psychological trauma in the perinatal period.
In this episode, Helen takes us on her painful journey of trauma through pregnancy and postpartum, to her subsequent research and advocacy as a result of her experiences. We also discuss the importance of language in this space, post-traumatic growth, grief, stereotypes, trigger warnings, trauma-informed care, and art therapy.
I thank Helen from the bottom of my heart for sharing her story so candidly.
You can find Helen on Instagram as @reallifemidwife where she uses her platform to raise awareness, validate, and educate us all about perinatal psychological trauma (and where she occasionally creates reels of herself in Grey’s Anatomy cast photos).
Please note, this episode discusses baby loss. If you are able to listen, I welcome you to join me in ‘sitting in the shit’ with Helen.
“I am a very proud mum of two little babies, one who is here earth side with me and one who is in the stars. Both of my babies have introduced me to the topic of perinatal psychological trauma, unfortunately.”
“It has not been an easy journey for us to have our babies. So I think that really opened my eyes as a clinician and a parent, and I think I’m still staggered by what the literature tells us in terms of the rates of people who have similar experiences in terms of their mental health and in terms of perinatal trauma.”
“I think I’d been pinged with the ‘anxiety’ label before, but when I look back on that it was in relation to periods of poor health, and it pails in comparison to my experiences when having babies.”
“With my first pregnancy, which was my little girl Amelia, I experienced terrible morning sickness and as a midwife I downplayed it massively. I thought 'this is morning sickness, this is what it is, it’ll resolve, you’ll get through this. But it made me very, very miserable to the point where I remember thinking I want to go back to every person I’ve ever had an antenatal consult with and give them a hug and say ‘I am so sorry, I did not ask the questions, I did not consider how you were tracking mentally with this.’ It was really awful for me.”
“I was towards the end of the first trimester when I realised this has affected my mental health - I have a very low mood, I’m feeling really down about this. So I decided to go and be proactive and go to my GP and ask for help - and she completely dismissed me.”
“So she offered me no help whatsoever, because she didn’t want - this was her reasoning - she didn’t want to prescribe me anything because she didn’t want the responsibility of being accountable for something if the [anti-nausea] medication caused a problem, which is fine but it was my first experience of being a patient, and having the knowledge and skills to advocate and ask for something and being completely rebuffed and then powerless to actually get help. And so that was the turning point in many senses of what happened afterwards.”
“At that point, I was vomiting pretty violently daily, and I wasn’t eating at all. I had zero enjoyment for food. Even if I was able to stomach it, it just felt like I was putting cardboard in my mouth. It was really unpleasant. And when I look back on the complications that happened in that pregnancy, I wonder if better nutrition at that time might have helped us… It’s very complicated but I have to live with these questions now.
“And I also think about how many other people have been impacted by these experiences of thinking ok well, I need help now, I’m gonna go ask the question, and then the response to that question is ‘no, I’m not helping you.’”
“The first speed bump was that period of low mood in that first trimester. Fortunately, the nausea and vomiting began to resolve around 19 weeks. Unfortunately, this was about the time I went for my anatomy scan - and they found that the baby was looking very small, no problems detected other than a small baby.”
“And this was at a regional hospital and the guy who did the scan was incredibly laid back. When I think about that appointment now, I see him as laying horizontal in the chair doing the scan, he was SO laid back.”
“At the time I guess I was like, ok, he’s not concerned. I’m a midwife, I have understanding of small babies and all of the considerations there.”
“And he said to me, ‘it’s fine, the midwives will follow up with you at your next appointment at 26 weeks’. So 6-ish weeks away!”
“But I just couldn’t just get that feeling out of my head that something wasn’t right. I thought, why is the baby so small at this point? It just didn’t feel right.”
“So I ended up texting a friend of mine who’s an obstetrician and I said ‘what would you do if this was one of your patients?’ and he said, ‘I’d get a second opinion scan. Come down to Melbourne and get a second opinion and let’s see what’s going on.’”
“And I was so glad he did that, because I think this is at the point where I started to worry and I started to lose the rational thinking part of the brain, so I couldn’t think straight and I needed full direction.”
“So we went down the following week for another scan in Melbourne and obviously it was more detailed. And they confirmed the baby was really, really small. And actually they suspected that the placenta was causing problems there - so they found the reason. So there we were 20-21 weeks with a major problem on our hands, and so this kicked off the rest of the pregnancy.” Unfortunately, Helen was also showing signs of pre-eclampsia.
“So we had this really awful period of being at 20-21 weeks and having to wait to see what the outcome would be, because they couldn’t help the baby, they can’t do anything on the inside, they can’t help the baby if it’s going to pass away at that point, and if the mum is getting sick then really the only treatment is to deliver the baby and deliver the placenta which means the baby would pass away by default, so it was a really, really awful position of just waiting to see - everyday is a battle.”
“I cannot verbalise what that period did to me - it felt like I was living with a bomb in my tummy and the bomb could go off at any point. I couldn’t see the countdown. I was scared to sneeze in case I set the bomb off, so it was really where my experience with trauma came into play and unfortunately, because health care clinicians don’t receive formal training in psychological trauma, I didn’t recognise what was going on.”
“So I normalised and dismissed it, and it did an awful lot of damage.”
At 25-26 weeks gestation, Helen states “the preeclampsia started getting worse... the baby was incredibly small, the placenta was getting worse, it was just not a very nice situation. I was on lots of drugs at this point, so it is very much medicalised, serious medicine at play, so I was completely out of my depth as a midwife.”
“Front and center was really this panic about the bomb inside me.”
“In terms of how the pregnancy played out, we actually got very lucky in the sense that I made it to 35 weeks and this is because of luck and also because I had an amazing obstetrician who was willing to monitor me incredibly closely with ultrasounds every 1 or 2 days to look at the baby's blood flow, look for the red flags that said ‘deliver immediately’ and because of that we were able to get as far as we absolutely could.”
“So we had a really good outcome in that sense. However, I was hospitalised for a period of that pregnancy, I was traumatised, and I lived in that traumatised state until the birth. And then of course because I had a very small baby in the NICU afterwards, the NICU perpetuated that trauma and compounded it. And so by the time I finally got my baby home, my brain was just destroyed mentally and I did not recognise it in myself, I was probably normalising what I was feeling and thinking, but I was very very scared all the time, I had some scary thoughts going on.”
“But I think if I’d looked at myself as an outsider I would have been quite reassured too because as a midwife I was looking after my baby perfectly… oh she has the knowledge, she's going to feed the baby, she's going to change the nappy, she’s going to be able to get the baby to sleep, she's going to be able to remember to take her medicine and get to the GP for the blood pressure check. And I was ticking all of those boxes but I think that comes with the hypervigilance side of the trauma - you know, I was all about ticking the boxes! But behind closed doors I was seriously unwell and nobody, not even myself, recognised that until we got to about 6 weeks postpartum.”
“I think it says a lot that it took 6 weeks of the sleep deprivation for it to really snowball to the point where I thought I’m in danger here. Basically I woke up one day - I’d had some very, very scary, intrusive thoughts - and I thought, I can't live with this anymore. I feel really unsafe. I'm home alone with the baby because husband's back at work, everyone's departed because you've hit the magic 6 weeks where everything's apparently fine.”
“So what I did was I rang the mental health crisis team at the local hospital and I spoke to a male and I think I just finished a breastfeed and I said to him ‘I can't do this anymore! I can't do another breastfeed!’ and he was like ‘What do you mean? Tell me about the breastfeeding’ and I was like ‘it’s not about breastfeeding, you fool!’ This is the thing, it’s so hard, even 4 years later, I cannot describe what was going on… the functional, rational, intelligent brain was completely off, I couldn’t get words out, I just knew this is bad, I'm panicking, I don't feel good, and I don't feel safe.”
“And in my head, I was making plans to escape because I thought I can't look after this baby, I'm not good for my husband, so I need to leave them be, but I need to leave them be in a way that I know that they're going to be ok and I'll just get out because this life isn't for me. That's why I was scared, because I was beginning to think what does that mean?”
“But that was a really positive experience with the crisis team, because within 2 hours I had 2 ladies on my doorstep who were plain-clothed, who were incredibly nurturing, made a cup of tea, one of them held the baby.”
“I desperately wanted the baby away, and see? I’ve reverted to calling her ‘the baby’ - I was completely separating for her!”
“Obviously they were completing a mental health assessment on me at the time but they did it in such a skilled way that I wouldn't have known what they were doing.”
“I think they were mental health nurses - but this is what I think was terrific about the service is that I, as a health clinician, couldn’t pick it. I couldn’t see them doing the mental health assessment. I couldn’t tell you what professional backgrounds they had. There were no health, or mental health terminology or jargon used. I just felt incredibly nurtured. It was like 2 nice women on my couch having a cup of tea with me, which is 100% what it needs to be and I just think that speaks to their skill. You know - this is an emergency response team and they did their job phenomenally!”
“At the end of that they said ‘look, I think you need to be admitted’ and I thought hallelujah, I'm going to get some help.”
“Unfortunately, as happens way too often, the unit was full - no beds. So I had a bag packed and they said ‘in the next couple of days if a bed becomes available you’ll get admitted so just be on standby’.”
“In the meantime, I’d called my mum over to be with me 24/7 and I'm very lucky that I have a mum who is willing and able to do that. And they got me an emergency appointment with a psychiatrist, we got some medication going, got a couple of diagnoses going, and very much fortunately with that support and medication, my symptoms began to resolve.”
“So within a few days, the thoughts were easing and I felt the burden was being lifted somewhat from my shoulders. So that was absolutely the turning point, but I would say that it took me a good 3-4 months after that to get to a point where I felt human again.”
“I got to a point of mental good health but I think I was changed completely because there I was as a midwife - you know, I thought I had decent clinical and theoretical knowledge in my head - and I'd been completely blindsided! And my first experience having a baby was just something that I had zero knowledge about, zero preparation for, and it forever changed my brain. Trauma works on the brain in a way that's similar to a brain injury, and that's with me for life now.”
As Helen reflects on, the PTSD was not picked up on straight away. “The words and the diagnoses came when I saw the psychiatrist and primarily they called it ‘postnatal depression’ and that really stung because I have a lot of familiarity with that - obviously professionally - and I just was hearing the word depression, depression, depression, depression and I was like ‘you’re wrong, I am not depressed, I am so highly strung, I am hypervigilant, I am so anxious, I’m on edge, I can't rest, I'm so panicky. Nothing about me is depressed! I'm the other end of the scale.’”
“So I mean I guess they they checked the right box in terms of postnatal mood disorder, there was a mood disorder, but it wasn’t until a couple of months later that I got the PTSD diagnosis and then when I began to think about that more and learn more about it and hear more from the professionals that were treating me, that I went ‘ok this sits with me, perfectly! What you are describing is completely what is going on for me’.”
“That’s I guess when I began to realise, ‘hang on! How is it that I don't have any understanding or knowledge or anything that relates to PTSD?’”
“So I guess that prompted my professional desire to work in this space. I think it's incredibly powerful that I have the lived experience to speak to - I wish I didn't.”
“It wasn’t until earlier this year actually that another psychiatrist I was talking to used the words ‘brain injury’ with me, and it hit me like a bus!” Helen originally didn’t believe psychological trauma could be likened to a brain injury. “But then when I thought about her words and I thought about my knowledge of trauma’s impact on the brain and the symptoms and how it manifests, I was like - she’s right - it’s just an invisible brain injury that people aren’t looking for, and aren’t aware of. And so in that sense it does change the brain!”
“And I think if you have perfect treatment, perfect awareness, perfect support, then it doesn't need to be lifelong. But the thing about trauma is that it only takes one little trip and you're back in that space, and so when I say ‘it's lifelong’ that's what I mean. I might have perfect mental health the next 20 years but then something unexpected comes up and I'm straight back to where I was.”
Helen also highlights that trauma is often only viewed in the narrow context of birth. “So that’s my problem with [the term ‘birth trauma’] is that people are out there having significant battles with preconception, miscarriages, ectopic pregnancies, pregnancy complications, postpartum complications - it's really not limited to birth! Even though birth probably contributes of a large proportion of people who identify as having trauma in this space, I think we’re blinded somewhat to the fact that it can happen elsewhere.”
“If the term was ‘birth or other trauma’ or ‘perinatal psychological trauma’ - something that encompasses the acknowledgement that we can have trauma at any point in that spectrum - from preconception right through the postpartum, anytime in that point, trauma can occur.”
“I’ve had two births and both of my births have been really good. They’ve been, for the most part, uncomplicated. They haven’t presented any health complications for me, and I look back at my births and I have positive memories. So ‘birth trauma’ for me is something that I just think, no that does not fit what what happened to me. What happened to me was 2 really bad pregnancies.”
“And I think if there was that widespread mainstream acknowledgement, then my problems might have been picked up by myself or someone else earlier and I would not be left with the experience that I had and the consequences it had for me and my life.”
“And so after Amelia was born, like I said, the first few months were really a very, very difficult battle with mental health symptoms but once we got to about 6 months postpartum I turned the corner - things were looking good, I was beginning to enjoy her.”
“Previously I’d said ‘no more babies, I'm not doing that again, that was horrendous!’ And I think that's incredibly valid - like, when I look at that experience I think no one else should go through that. But of course, when I started to enjoy her, I started to enjoy life, I started to feel like myself. When she was probably about 10-11 months old I went back to work so I got some form of my old identity back, I was functional. That's when I begin to think maybe I can have another baby - but I just need to think very seriously about how we manage this knowing what happened last time!”
“So there were lots of things to think about it. And so I think she was probably 1 and a half or so, maybe a bit older, and I went and had a preconception appointment with my obstetrician - basically just to hear about the statistics in terms of recurrence, get a game plan in place. What was he going to do if xyz occurred? What was I going to do to make sure that I was in the best health and that I had support and resources ready to go.”
“And so I was equipped with that information, probably sat on it for a few months, and then my husband and I decided that it was worth the gamble.”
“Ironically, Millie was conceived without much thought, I found out I was pregnant 2 weeks before we got married… so we assumed that the next time would be easy and in fact it took like 7 or 8 cycles I think, so it was a very long, much longer, much more planned in a sense - if you can ever say that! But we did get pregnant with little Lincoln.”
“So of course the focus of that pregnancy for me was the first trimester - Am I going to be unwell again? Am I going to be spewing and nauseous and not able to eat? And then of course thinking about the baby's growth and the placenta - Am I going to be having the preeclampsia again? So the first trimester was amazing! I felt so much better, I was able to eat and I thought, this is why people have babies, multiple babies, because this is the experience!”
“So I felt really good, it was amazing. And then as we kept having ultrasounds towards the end of the first trimester / early second trimester, the baby’s growth was looking good, the placenta was looking good, all our tests were coming back perfectly. And I thought we’re going to win! We are going to have the pregnancy that most people have, that most people emerge from feeling somewhat mentally intact.“
“And then we went for the anatomy scan - which was of course where it all went wrong with Millie, or the start of it all. So it was a major trigger for me and I’d done a lot of work to be able to face it. And of course Covid reared its ugly head. A few days before the anatomy scan was booked, we went into another lockdown.”
Unfortunately, because of the restrictions, all accommodations to allow Helen’s husband to attend the anatomy scan with her were rejected.
“So I went to the appointment alone… but I was fairly confident because all of our scans to that point the growth had been fine. So I think I let myself go to that appointment thinking we might get lucky, it might be ok.”
“And unfortunately, again, we got news at the end of the scan that while the baby’s growth was perfect and the placenta was perfect, our little baby had multiple significant abnormalities and again they didn’t know what that meant.”
“And I knew at the end of that appointment when I was hearing that news, that we weren’t going to be taking him home… I just knew. And some of the doctors were quoting me like a 95% chance that it would be nothing and a 5% chance that it would be something serious. And I knew that actually that would be reversed… and unfortunately, we did all the tests, we did lots of investigations.”
Despite an amniocentesis, an MRI, and multiple ultrasounds to get a better idea of the abnormalities, Lincoln unfortunately passed away at 27 weeks gestation.
“But my birth with him was beautiful. It was long, I’m glad that he gave me that long labour because it was more time with him. We had some time with him after birth. So I have a lot of pleasant memories of Lincoln. It’s just unfortunate that he didn’t make it, and he’s not with us physically today, but I’m also grateful I guess for him giving me his story and what that adds to mine, and I guess my ability to have a voice for people, the vast amount of people and families, who have lost a pregnancy or a baby.”
“Having lost a baby I would say that people's actions and words have been part of the most upsetting part of the whole deal which is really sad, you know, it's all stuff that didn't need to happen and it did and it compounded.”
“The people around us can be incredibly powerful in how we perceive and respond to that event. So I think if people around me had been able to acknowledge what had gone on for me with Amelia's pregnancy, I might have got help earlier and prevented that spiral and I might have had a nicer time in the first few months with her. I might have prevented a further mental health decline which would have been amazing.”
“The same with Lincoln I guess - for the most part, people validated it, and said ‘Yes it’s shit, yes it’s devastating, it's tragic’, but when people don't have that response, unfortunately it has this effect of encouraging someone to suppress what is their natural response or dismiss it. And the Snowball Effect of that is that it delays or prevents help-seeking which has huge ramifications.”
“Because we’d done so much work to prepare for that pregnancy, I had a lot of support already in place. So as soon as we had that anatomy scan, I remember going to my psychologist and it was like déjà vu after the last time… but I had the supports in place, I had my game plan, and I had the knowledge this time to recognise trauma symptoms in myself.”
“It's really interesting because I still see Millie's pregnancy as the worser of the two - you know, he was growing perfectly, the placenta was growing perfectly, I had no signs of preeclampsia - but of course I wouldn't wish Lincoln’s pregnancy on anyone and I wish he was still here.”
“I think what I wasn’t prepared for is I had a completely different psychological response and I'm going to add a content note here because I actually experienced suicidal thoughts for the last few weeks of that pregnancy and that took me by surprise because that hasn't happened with Millie - I had the escaping thoughts but I hadn’t had any thoughts of harm - but yeah that plagued me with Lincoln and that was horrible because I was trying to keep myself and him alive!”
“I think what's interesting there is that it’s not well handled in health care either because I never felt like my disclosures - I was very open with that! - I never felt like my disclosures were taken seriously. And I think people probably looked at me and thought she's pregnant, she's a health Professional, she’s got a toddler! - and really, the fact that I had a toddler is probably the reason I'm alive today because I couldn't entertain any thoughts there. But I certainly had a plan but no one asked me about it.”
“And I know I'm speaking very candidly but I do think it's important because no one needs to be comfortable talking about suicide but we need to know we can go there if it presents. If there are any health Professionals listening here, there a couple of questions, like 2 or 3 questions, that you can pop in your toolkit to ask about people who might disclose suicidal thoughts or who you suspect you might be at risk of that. Something as simple and direct as saying ‘do you have a plan?’ gets you in the door. So it’s actually incredibly easy, it just makes us uncomfortable.”
“And in society, we like to avoid stuff that makes us uncomfortable, so it's easy to just ignore and not go there, but we’re not doing ourselves or the people we work with any service by doing that.”
“And I see it in health professionals as well - there’s topics in there we don’t like, and the natural response as humans is to avoid. But if you can become a little bit better at sitting in the shit, it makes those moments much more tolerable and it makes you much more comfortable with going into them, and therefore providing much more holistic and comprehensive care.”
“Once Lincoln had died - it’s funny, isn’t it? I’m trying to tap into those memories and they’re just not there - a lot of it’s repressed and I acknowledge that that is my brain protecting me - it might come back in the future and I’ll deal with it then, but really the first few months was a blur.”
“I restarted some medication when it happened which probably helped but it didn’t even feel like a band-aid at the time.”
“My brother’s girlfriend - we were at his house, soon after it happened - she didn’t say a word, she just put some watercolour paints down on the table with paper and said ‘go for it’, really without any words. And it was really stupid, but I felt like for that moment my brain had turned off. So I bought some watercolour sets and for those first few months at home, water-colouring was really the only thing that I describe as turning my brain off because you’re so focused on what’s in front of you… so that was helpful for me to move through those first few months… 15 months on, it still continues to be incredibly helpful.”
“It’s another reason where I say the fact that I had Millie was protective because I don’t even know how I would have done that if I’d not been forced to get up every morning and be a proper mum.”
“But eventually, I guess I started being more functional day to day. I started to pick up my PhD again. I guess it was reinforced to me with that experience that there was such a need for research in the space and advocacy, not just for the people experiencing it but for maternity care clinicians.”
“Lincoln, if he was alive today, if he was born on his due date he would have just turned 1, but he’s not with us. I do feel like a lot of my work he’s present there, I wouldn’t be in this space so strongly if he was here today, I’d be being a mum to a boisterous one year old boy. But yeah, that’s what I’m focused on, that’s my post-traumatic growth.”
“Our story, we hope, continues. We spent the entire year of 2022 doing IVF to try and get a healthy baby. Unfortunately, for whatever reason, IVF is one of these battles where they can give you statistics and chances and no guarantees, and we are one of those couples where we haven't had those guarantees met. So at this stage we are looking to continue into 2023 in the hope that the IVF will work, but it's been a major battle that I don't think even the doctors anticipated for us because again on paper we look like a healthy fertile couple.”
“So yeah it's one of those things that I don't understand why it has to be so difficult for us. I hoped going into IVF that we’d be one of these couples that got lucky first time around… so IVF is another battle for us and it's one of those things that unfortunately no one can tell us how it will end, but I guess what keeps us going is the hope that it will work out in our favour and we can finish our family with a healthy baby at home with us.”
“It’s funny, I went into the journey with IVF thinking, alright, I have good knowledge, good resources, strategies to equip myself for the mental battles this will bring. And it was only a few weeks or months ago that I realised ‘hang on, this is starting to take over me now I need to take a step back because this is becoming bigger than the other stuff that I'm already dealing with’.”
“It’s a day-by-day thing for me, and I think I’m beginning to appreciate the fact that this is what they’d said it would be - it’s the rest of my life… we went into that pregnancy hoping that we would complete our family and put this chapter of our lives behind us, and he’s not here and he will never be with us again.”
“So that’s why I think every day is a different day, and some days I’m really good and some days I’m not.”
“Grief might be a ‘normal’ thing to experience in our life but it’s an uncomfortable and unpleasant experience, so why should we not support people who are going through that - holding space, holding them, providing resources and support? And then also acknowledging the fact that grief can go pear-shaped - it can impact mental health, it can impact our functioning, it can impact every facet of our lives in terms of work, relationships, social life, enjoyment of things, parenting. So we can write it off as a normal life experience, but I think it’s important not to. I think that minimises how it impacts on us when we are experiencing it.”
“So I really see my position in this space as someone who is trying to work to raise the acknowledgement of this topic and improve our responses - given how prevalent it is in people who are having babies.”
“I wish I didn’t have to… I wish I could have the privilege of being a midwife on Instagram who talks about the mundane stuff like caring for your baby’s umbilical cord, and how to change a nappy, and the quirks of pregnancy. But instead I’m here in this very, very difficult, and uncomfortable, and unpleasant area.”
“And I’ll just keep working until we have that acknowledgement that it’s super common and have the infrastructure in place that acknowledges how common it is.”
“In that sense, it helps me live with it to work in this space. Yes, I shouldn’t have gone through it. It’s incredibly unfair, I don’t know how our story will end. But yeah it helps me to know, without pumping my own tyres, that I have a lot of power in this space because I’ve done extra training, I’m researching actively, and I have the lived experience.”
“That’s why I put the time and energy into it, is so that I can hopefully get through to some people who need it and make what is a really difficult time a tiny bit more tolerable.”
“It just helps me live with it.”
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