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EPISODE 10: How Lived Experiences Shape Medical Perspectives with Dr Mariam Chaalan and Dr Ali Hodgkinson
470 Plays1 year ago
In this special bonus episode, we bring together two practising doctors: @askthedoctor Dr Mariam Chaalan, and Dr. Ali Hodgkinson from Genea Fertility.
Pink Elephants co-founder and CEO, Sam Payne chats to the doctors about the many aspects of pregnancy loss. They delve into how narratives can shift, misperceptions can be challenged, and the crucial role lived experience plays in reshaping perspectives.
This episode is a testament to the power of empathy and understanding in the realm of women's health. Get ready for an insightful journey into the lives of these remarkable doctors and the profound lessons they've learned along the way.
Get in touch with Dr Mariam:
https://www.linkedin.com/in/mariamchaalan/
https://www.instagram.com/ask.the.dr/
Get in touch with Dr Ali:
https://www.instagram.com/dr.ali.hodgkinson/
https://www.dralihodgkinson.com/
https://www.genea.com.au/natural-conception/not-just-ivf/fertility-assessment
EARLY PREGNANCY LOSS SUPPORT
If you or someone you know has experienced miscarriage or early pregnancy loss, please know you are not alone.
- For crisis support, please call Lifeline - 13 11 14.
- Access all our support
- Connect with Peer Support
- Join Online Communities
- Emotional Support Resources
- Follow @pinkelephantssupport
STACEY JUNE LEWIS
If you’d like to reach out to Stacey for counselling she is currently taking new clients. Find out more via her Website or Instagram.
You can also follow her personal Instagram account where she shares some of her lived experience.
JOIN THE MISCARRIAGE REBELLION
Pink Elephants believe everyone deserves support following the loss of their baby.
We have been providing support to many ten's of thousands of people for nearly 8 years, raising funds through generous donors. We now need ongoing Government support to empower our circle of support.
We are calling on the Government to provide us with $1.6million over 4 years to help bridge the gap. Sign our petition.
Early pregnancy loss is not just a private grief, but a national issue that requires collective empathy, awareness, and action. By recognising and addressing this, we can make meaningful change in the lives of 100,000+ women who experience early pregnancy loss every year.
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Transcript
Introduction to the Podcast and Topic
00:00:04
Speaker
Welcome to the Miss Coach Rebellion. I'm Sam Payne, CEO and co-founder of the Pink Elephant Support Network. And I'm Stacey June Lewis, counsellor, psychotherapist and broadcaster. This podcast is where we share stories of many Australians who have lost their babies to early pregnancy loss.
00:00:21
Speaker
With evidence and empathy, we unpack the shame, blame and stigma and the lack of support that many face. This is a loss that has been silenced for too long. We deserve better. We are here to normalise the conversation. And we're here to make lasting change.
00:00:37
Speaker
Welcome to today's episode, which is a bonus episode.
Medical Insights on Pregnancy Loss
00:00:40
Speaker
We have asked the doctor, Maryak, and we have Dr. Ali Hodgkinson from Genoa. Both of these doctors are practicing doctors and we actually are calling this a bonus episode because we brought them on to be experts underneath other interviews to kind of give us medical terminology, which we are not here to give you, to define things like an ectopic pregnancy or a fertility cycle and what that looks like.
00:01:05
Speaker
But when we actually looked back at these interviews, we were blown away by the content from a validation point. And we know that validation is at the heart of the work at Pink elephants. To hear medical professionals say that before their own lived experience, this was how they treated women and partners who went through these experiences and how that has changed. It's going through their own journey speaks volumes.
00:01:30
Speaker
And it's a really important one for everyone to hear. So we hope that you enjoy today's episode. There is some clinical covering of different types of support and different experiences of fertility challenges and pregnancy losses and still worth. But we really hope that also you hear within this interview how a narrative can change and misperceptions can be challenged and how lived experiences at the heart of that. It's a good one. And I'm excited that we get to bring these two to you in full.
Personal Stories and Empathy in Loss
00:01:57
Speaker
Enjoy.
00:02:01
Speaker
Today, I get the absolute privilege of being with us, the doctor, Dr. Maryam Shalom, is a family doctor, clinical researcher, and most importantly, a mother to rainbow twin boys. She is really passionate about evidence-based medicine, holistic care, human rights and clinical research, health literacy and leadership.
00:02:21
Speaker
She's trained in multiple hostels across Australia and has spent time abroad working in remote communities in Africa. She incorporates years of experience and expertise in the area of mental and physical health by addressing issues pertaining to women's wellbeing. She's recently presented in the Medical Women's Society at the UN Commission of the Status of Women. She's featured in articles in the Sydney Morning Herald and Mamma Mia, and she's a regular guest on the project.
00:02:46
Speaker
You will find her, if you want to follow her yourself, improving health literacy on Instagram and TikTok at Ask the Doctor, and we will cause link in all the show notes. She generously has supported the work of Pink Elephant, supporting parents navigating the journey of miscarriage and infertility, which is something that she holds dear to her heart and has done this for a number of years with us. And it's an absolute privilege to have Mariam here with us today.
00:03:10
Speaker
I just want to add as well that as if all of that is not enough she's also launched another business which you can give a follow which is at taste bulbs and early allergen introduction products for babies.
00:03:21
Speaker
So we're going to jump straight in this morning and I thought we know that you're coming on here as a practicing GP and that's fabulous. But I think it's really important that we also share our own lived experience and where we meet the experience of pregnancy loss. And I know that before your beautiful twin boys, you experienced three losses. So if you could talk us through that, that would be amazing.
00:03:43
Speaker
Yeah. So, um, I, you know, as a doctor, I thought, you know, the journey through parenthood would be quite easy. You know, we do see some miscarriages in clinic. Um, but I thought, yep, you know, mum and my sisters got pregnant quite easily. It's not going to be an issue for me. Um, and that was so far from the truth. Um, so yep, I got pregnant. Um,
00:04:09
Speaker
Four years back, and unfortunately that was a stillborn pregnancy, and I delivered and lost Samuel. And following that, I just had this desire to be a mother. So much more, I just really wanted to have a live baby in my hands. And that journey through infertility went for about two years, followed by two further miscarriages.
00:04:35
Speaker
And then I was pregnant with my rainbow twin boys and they came along two years later and they're toddlers now. It was a journey and something definitely...
00:04:51
Speaker
It's different when you're on the other side, especially as a health practitioner. You see these things and you counsel these parents, but you never really understand until it's something you've walked through yourself and it's a hard, hard journey. Yeah, absolutely. I love that. You never understand until something you walk through yourself and that's what's at the heart of Pink Elephant.
00:05:12
Speaker
early intervention, peer to peer support, that lived experience, that connection with someone else who has walked a different but very similar experience and can kind of hold space in the same space and support for women. I want to unpack with you a little about the differences. We know that Pink Elephant is specifically created for anyone who experiences what we define as an early pregnancy loss or miscarriage and that's prior to that 20 week.
00:05:38
Speaker
Sadly, you've experienced still worth it, Samuel, and then miscarriages after that. How were you met differently after the experiences of both of those? I feel like with Samuel, I probably got a little bit more support because they were like, it was an actual baby. To be honest, it wasn't the second and third. I agree probably just as much if not more after
00:06:06
Speaker
losing those, losing those babies as well. So I think there's this perception like how far along were you? Oh, you know, you were only six weeks or you were seven weeks or you only knew you were pregnant for three days. It's fine. Um, that, that attitude really has to go because, you know, I've, I've spoken to, to, to parents and I've lost babies at seven weeks and I've, I've spoken to parents and I've experienced it myself, you know, losing a baby so close to term.
00:06:32
Speaker
And those feelings can be completely identical, that grief, that loss, that that mourning. And I feel like we really need to change that perception. How far along were you? Every
Mental Health and Support in Pregnancy Loss
00:06:45
Speaker
loss is a loss and for every individual that is going to be mourning in their own personalised way and we need to respect that.
00:06:52
Speaker
100 percent, I couldn't say it, and better myself, and we know that. We sadly do hold space for women who experience both, and often what we find is that those that have had an early loss as well as a stillbirth feel like their early loss or their miscarriage hasn't been met with any validation. Like you said, there are comments like, it wasn't a real baby yet, or how far along were you? It can be really, really hurtful. It's important that we try and validate all losses, and all losses do impact women in very different ways.
00:07:22
Speaker
I want to move more now to your GP experience. I know that you've been an incredible GP, you're an advocate in women's health. We love following your NASA doctor and all the amazing things that you cover for health literacy, and you break things down in a way that everyone understands, and I think that's really meaningful.
00:07:41
Speaker
What is it about pregnancy loss, particularly early and miscarriages that you see in practice and from women's experiences that adds to the trauma that they may or may not be going through?
00:07:53
Speaker
I feel like personally, and I probably did this myself before my own losses, was as a doctor, I think your first concern is the health of the patient and that you forget the mental aspect or you forget the wellbeing of the female and the father as a whole. So you're just like, okay, so let's make sure there's no infections. Let's make sure that there's... And there's even the medical terminology can be quite like, oh,
00:08:22
Speaker
They've been incomplete removal products of conception. That language as well, and let's just do an ultrasound to confirm all the products have been removed. All that terminology we're just checking up after the DNC.
00:08:40
Speaker
the idea of the female's mental health and wellbeing get missed or just swiped onto the carpet and not even ask that many of those consults. It's just follow up and we'll see you when we see you and don't try to get pregnant for the next month or two and we'll talk about it when you're ready and see you later and that's all it is. There's no referral, there's no validation of the loss or how are you feeling
00:09:06
Speaker
Then she walks out the door and then she's just like, wow, that's it. That's all this was and it's hard. I've been guilty of that until I've experienced it myself and I had my own health professionals treat me that way as well and I thought, wow, this is not right. I'm a mess right now and I need support. I'm not in a good place. We really need to do more.
00:09:33
Speaker
Yeah, I hear you the feeling of I'm a mess right now and I need support, but that's what we hear from breed parents in our community. They can't find the words themselves and they're not in the headspace to advocate for what they need. It's often only with retrospective thought that they can say, actually, what I needed at this time was validation, empathy, and a referral for support. We know again from research that over 80 percent of women we surveyed wanted referrals for peer support and less than a fifth were actually receiving it.
00:10:03
Speaker
How do we change that? How do we engage GPs to understand the role that they play not minimizing the loss and providing a clear referral pathway for support?
00:10:14
Speaker
I feel like for me, it was my own lived experience that changed the way I reflected and treated patients going through the same thing. I think there definitely needs to be more education. We know what to do from a medical standpoint, but part of that checklist has to be
00:10:34
Speaker
check in on the female, provide those adequate supports, even if she feels well at that point in time, because had many a female come and say, I feel fine, and the next day they're not fine. So it's that ongoing review, checking in, providing them with all the supports, referring them to the pink elephant, creating that mental health care plan if they need input from a psychologist early, checking in on the father as well.
00:10:59
Speaker
All those sorts of things, just having that at the back of their mind, knowing that that is just as crucial as checking in on the physical well-being of the mother. Yeah, 100%. I couldn't agree more. I know again that we often hear from parents that are met with the way that they are deserved and needed.
00:11:17
Speaker
The way that they feel they can grieve, the loss of that child to them or the baby to them is much healthier when they've been given all of those things. We can't take away their grief, right? We're not here to do that, but we can meet them where they are. We can provide that empathy and the connection for support. When a GP, who is a medical professional who has a position of responsibility, provides that support and referral for support, what you're saying is this experience is worthy of support if you choose to need it.
00:11:45
Speaker
Like you said, not everyone does and that is okay too. We need to normalise all the different reactions for grief when you lose a baby this way. When you touch a little bit there on the partner side of it, what do you see kind of in practice around the partners?
00:12:02
Speaker
Well, I generally see, you know, the female will just come in on her own and then I will ask, so, you know, how is your partner doing? And then it would kind of be like a light bulb moment and I actually don't know. And then I kind of suggest it might be good for him to, you know, book an appointment, even if he seems like he's doing well or he, she's doing well, it would be good for them to come in and I can have a chat to them because they're often overlooked and they kind of have a grieving process themselves.
00:12:30
Speaker
I feel like for the partner, it's more like I'm not allowed to grieve because I didn't experience this personally. I need to be the beacon of light and support for my partner. I need to kind of carry this and I need to hold it together. And so I feel like they have their own kind of little grief and
00:12:48
Speaker
They're a little bit forgotten as well. So, you know, having that loggia with them is really, really important. Even if it's just one chat, having that validation that, you know, what you're experiencing, what you're feeling.
00:13:01
Speaker
is important, is right, and validating that experience for them is really helpful. Yeah, 100%. And again, we know that from research. University of Adelaide have published research on the partner experience of pregnancy loss, and they do. They might grieve outwardly differently to their partner because we have different types of grieving styles, but it doesn't mean they're not grieving, and they too want the same level of support, empathy, and understanding.
00:13:26
Speaker
You touch a little bit on reaching out to them and showing that they've kind of had an appointment and a check through as well. One thing that's always kind of irked me, as a mother that's had three pregnancy losses and three live babies, I've really struggled with every time I've given birth to a child that I take home in my arms. I have to go for this six week postpartum checkup, which is one of the most difficult things to do if you're getting out of the house. It's really, really hard at that point. And you go and they do all these fabulous things that are needed. And I've gone to all of them.
00:13:56
Speaker
But I often wonder why don't we do that for women who've lost a baby too because like you said, women might present as okay in that early days and then it might actually be something that hits them a bit later. I wonder whether you've got any thoughts around that at all.
00:14:13
Speaker
I think that would be amazing. And I think any experience like that definitely requires that support. And I would love if we had that system in place. I think any female that suffers a loss, even if it's an abortion by choice, those females still suffer from grief. That's still a lived experience for them. Even though it was their decision, I still see females grieve that loss. So I think anyone who has a loss
00:14:40
Speaker
whatever, whether it's really early or right before their scheduled day of delivery, requires those checks just as we do with those postpartum checks. I would love it if we had that in established guidelines. That would be amazing.
00:14:55
Speaker
I think it needs to be part of those guidelines, right? That's six-week postpartum because we are postpartum. We may have had a D&C for wouldn't have a better term for that. We may have chose to miscarry at home, but either way, we've carried a baby. Our hormones have changed. We've gone through that experience and we are postpartum in many ways. I definitely think that should happen.
00:15:17
Speaker
What in terms of mental health impacts do you see in practice? When we know that when we don't meet women with the validation that they deserve, the trauma can often be exacerbated and they can kind of isolate themselves and that can, again, exacerbate poor mental health outcomes. What do you see in practice?
00:15:35
Speaker
Well, I definitely see these females at increased risk of mental issues, depression, anxiety. I see a lot of fractured relationships with their partners as a result of their experience. And then I see a lot of these females just go into this circle of desperation for another pregnancy. I just need to feel this void. A lot of the time it's just because they haven't really validated their grief. They haven't really
00:16:02
Speaker
being counseled or spoken to, and they just want to fill that void as quickly as possible with another pregnancy. And that's not always the healthiest option at that point in time. Like I said, the physical health is just as important as their mental health at that point in time.
00:16:20
Speaker
Yeah, absolutely. Again, we know that those that are offered the support that they deserve, often we can minimise the poor mental health outcomes. We can't take away things like anxiety during pregnancy after loss. We know how incredibly hard that is. I guess I probably want to dig into that a little bit more here that you would assume as a women's health GP, see these women again when they're pregnant. How are they presenting?
00:16:44
Speaker
Why I personally suffered like when I was pregnant with the twins, I had anxiety through my whole pregnancy. I was actually told by my obstetrician that I was not to buy anything for the baby until I was at 36 weeks. So you could imagine that I was heavily pregnant, obviously pregnant, and thinking I could lose these babies at any time. So every day once I had this anxiety thinking, today's the day they go, today's the day they go,
00:17:11
Speaker
But it's so important that people know that there is so much support for mental health issues during pregnancy and seeing your GP and speaking to someone. And if you need medication, there are saved medication to take during the course of the pregnancy as well. And that those options do exist and that you shouldn't suffer in silence. And for me personally, it was finding females who had been through the same thing or going through the same thing. That was my
00:17:40
Speaker
For me, that was what really helped me, just network emails. The Pink Support Network has so many females out there that are told their stories and just listening and having that connection with someone who really gets it really helps.
00:17:57
Speaker
For anyone who is currently going through that journey of pregnancy after loss, there are a number of support options. Pink elephants has pregnancy after loss online communities where you can have that peer-to-peer connection, which I know also really helped me in my last pregnancy as well. It was that whole, I could read those posts in that group and think, okay, I'm not going crazy. That is how they feel too. This is what they have done. Maybe I'll try that.
00:18:20
Speaker
But also we wanna normalize needing other support. I also saw a therapist during pregnancy after loss and many women need to. There are other organizations like Pink Elephant like the Gidget Foundation and Panda who offer amazing counseling support services and link links into Psychologist as well. We'll link to them in the show notes.
Systemic Changes and Advocacy
00:18:40
Speaker
I guess what I want to move on to is the miscarriage rebellion is a movement by the pink elephants. It really is designed to invoke empathy by telling our stories and to incite action. We want to have all of our listeners share their experience with their local MPs. We want them to write their letter, their experience. We want our babies counted. We want our experiences shared because they matter and we know that we can change the narrative.
00:19:08
Speaker
And we were more likely to think we can't remove these experiences, we're not going to stop them happening, we can't remove the grief. But if the system could be changed in some way to meet women and their partners in a different way, and you had this magic wand that you could weigh, and you could change one thing, what would that thing be? I think it would be...
00:19:31
Speaker
As you mentioned, changing how doctors treat the patients after a loss and just implementing that mental health and wellbeing and support for both the lady and her partner after a miscarriage and implementing that in our healthcare guidelines and ensuring they have had access to support and they know that these support networks exist.
00:19:58
Speaker
I think that is so important. It's going to decrease the risk of these patients experiencing anxiety and depression. It's going to make them feel validated in their grief and loss. They're going to have a network of people that they can speak about their lived experience with and feel that connection and support. People have experienced the same thing, and that's going to help them with their grief.
00:20:19
Speaker
Um, and it's going to help them moving forward as well. So I would love to see that. I hate, I hate it when I have patients come in and they tell me about their experiences with other GPs, you know, and as I mentioned, you know, I was that GP before my own losses. Um, and this is not to take a dig at GPs, but, um, it's not part of the education. It's not part of the training and having a healthcare professional sit with you and look you in the eye and say, I'm sorry for your loss.
00:20:46
Speaker
What you're experiencing is normal. We are going to help you. We are going to support you. I'm going to connect you with the support that you need. If I had that, I would have felt like, okay, this is normal. I feel so validated with what I'm feeling and what I'm experiencing.
00:21:04
Speaker
It's okay. This shows that you can get pregnant. It's amazing. Oh, you're only at six weeks, or you're only at 10 weeks. Remove the language, education with what to say, and education on the support to who to refer to for these healthcare professionals would be a dream. I'd love to see that.
00:21:26
Speaker
100 percent, I couldn't agree more. I think it's a really beautiful share from yourself when you come from a place of, I said those things too, and then it happened to me, and then I changed my response. I think there's so much hope in that. We absolutely don't have the intention of shouting out on any type of health professional at all. We know that this is something that's missed in training and unless you've walked this journey, you don't understand. Therefore, how would you know to change your language? You're trying to do the best that you can.
00:21:55
Speaker
So we hope that this is used as a tool for health professionals to help them understand our journeys more and to change their language. We want guidelines in place specific to early pregnancy loss. However, we can't wait for those to happen because that's why pink elephants exist as well. For the approximately 300 women every day who go through this, they deserve validation, empathy, and connection now, today. They deserve everything that you just covered off then. And I know for me, personally, the difference I would have made
00:22:23
Speaker
would've been huge. I too had a doctor pass me a yellow stick-it note with ERPC wrote on it, and the number for the ePath Clinic. And then what did I do? I Googled ERPC, and yeah, it sent me down this whole rabbit hole of misinformation, scare stories, and a language that was incredibly triggering because to me that was my baby.
00:22:44
Speaker
It's really important. Thank you so, so much. I love everything that we do with you. Again, anyone listening, please follow Ask the Doctor on Instagram and TikTok. She's an amazing lady making change in many women's health spaces, and we're really grateful that you are supporting us in this way too. Thank you.
00:23:08
Speaker
People don't talk about it, but it's happening behind closed doors, hidden behind smiling faces. There are so many people suffering in silence right now, unable to access the support that they need and deserve, simply because they don't even know that there is support available.
00:23:32
Speaker
The pink elephants community is made up of people from all over Australia. Some come from the big smoke, others from the bush. Some of us have heaps of friends and family around. Others have none. Some have lost babies at five weeks. Some had ectopic pregnancies.
00:23:54
Speaker
Some had multiple ultrasounds. Others only ever saw the two red lines on a positive pregnancy test. But we all have something in common. We have all lost a baby. We are all bereaved parents.
00:24:13
Speaker
There are estimated to be over 100,000 of us across Australia every single year. Please help us connect with these people to give them the support that they deserve. No one should have to lose a baby and be left on their own to navigate their grief. Help Pink Elephant support more bereaved parents. Visit pinkelephants.org.au
00:24:44
Speaker
Now, let's get back to today's episode where we welcome one of Janaya's fertility GPs based at their Sydney CBD clinic, Dr. Ali Hodgkinson. Dr. Ali is an experienced general practitioner with a keen interest in all aspects of women's health. Her personal lived experience of infertility sparked
Fertility Support and Testing
00:25:06
Speaker
her passion for supporting patients as they navigate the unique challenges of their fertility journey.
00:25:13
Speaker
Welcome, Dr. Ali. Good to have you here with us today, Ali. Ali is a GP who specialises in fertility and works with Janaya. Janaya has supported Pink Elephants for many years from the beginning when we were just an idea to where we are now providing support for women nationally all across Australia.
00:25:33
Speaker
I know there's many questions that parents would love to ask you. We're going to dive straight in, and I think I'll go from the beginning with if you could talk us through the process of when a woman should ask for help with her fertility, when she'd be trying to see a GP like yourself with that additional kind of knowledge around fertility.
00:25:56
Speaker
Yeah, so thank you so much, Sam. It's such a pleasure to be here. I absolutely love Pink Elephants and it was such a support for me. So in terms of when should families seek support from a fertility specialist, the general advice is that if you are under 35 years of age and actively trying to conceive,
00:26:25
Speaker
if you haven't.
00:26:28
Speaker
conceived by 12 months, then it is appropriate to seek review with a fertility specialist. And if you are over 35, it's recommended that you don't wait as long because unfortunately, we know that as we age, it does significantly impact on our fertility. So we would recommend that you only try for around six months before seeking a review.
00:26:57
Speaker
And the caveat to these rules of duration of time are that if you have any concerns, if something doesn't seem right, if you have symptoms or a known medical condition such as endometriosis or issues with ovulation or anything else that you're worried about, then obviously you can go and see your GP to discuss those concerns.
00:27:24
Speaker
Obviously, we will talk about, I'm sure with miscarriage, if you've experienced more than one miscarriage, then it is recommended that you see a fertility specialist. Absolutely. I'm glad you brought those arbitrary numbers.
00:27:41
Speaker
A purpose, because we know biologically, like you said, fertility does change after a certain age. But also, I think what you've just done there is validate a woman's knowledge of her own body and that if something doesn't feel right, then you can go and see your GP at any point and ask for referrals and ask for tests and you can advocate for yourself. Yeah, definitely.
00:28:04
Speaker
And talk me through so someone comes to you they haven't been conceiving their struggling and they may or may not have had a loss. What kind of test what kind of things would you look at for that couple what would that look like to them.
00:28:19
Speaker
Yeah, so I think it's really important to remember that seeing a fertility specialist or referral to a fertility specialist does not mean IVS. So what we would look at if you are a couple that have been trying and not succeeded in falling pregnant, then we would have a chat to you about your medical history, understand
00:28:47
Speaker
how you have been trying and then we would look at doing some tests to see if there are any underlying causes for why it hasn't happened yet. And so there are many different tests that can be done.
00:29:02
Speaker
So obviously, fertility is very complicated. There's lots of different factors involved and things like checking the sperm with the semen analysis, checking that to see if you are ovulating, going through all the lifestyle factors which can really contribute to fertility. That plays a really important part.
00:29:28
Speaker
And so there's a number of tests that can be done depending on your history. So a lot of it is really talking to the fertility specialist or the GP about your histories, and then we can do the testing. And the outcome of this review can be something as simple as just reassurance and some advice, and then you can continue trying.
00:29:55
Speaker
or there are a number of minimally invasive things that can be done such as ovulation tracking whereby we do blood tests to really check that you're ovulating and then timed intercourse. So that, you know, there are lots of assisted reproductive technologies that we can do before you actually get to IVF. So I think that's a common misconception.
00:30:23
Speaker
Yeah, I agree. We often have this assumption, okay, I haven't fallen pregnant, I need IVF and an IV miracle cure. And it's not, most people are not successful in that first round of an IVF. Yeah. And also, like you said, there's that in-between of many things that we can look at that could be tweaks, change, or assist reproductive therapies that can be added on in that first instance. Yeah. If we move now to miscarriage and pregnancy loss, um,
00:30:49
Speaker
It can be so devastating for the parents who are going through that. And I know from personal experience, I'd had my second loss and was asked by my GP or informed by my GP, then if you have three, we can test you.
00:31:04
Speaker
and now is not wanting to go and have a third pregnancy with the risk of another loss or outcome. We know that that real has changed in the UK now. We can see some change here with Ransburg definitions changing as well. What are your thoughts around the number of losses and kind of seeing a GP and asking for help? Yeah, so I mean three losses just seems
00:31:27
Speaker
way too many tests to wait in order to have some testing done. And it is really reassuring that globally, you know, international guidelines are now suggesting that it is two consecutive losses that should warrant further or a couple should be offered the option of doing testing if that's what they wish to do. And also
00:31:53
Speaker
It's also important to note that if it is a one loss, but it is later in the pregnancy, like after 10 weeks, that may also, because that's less common and it's a bit more unusual because usually the losses occur earlier than that, that could also warrant investigation as well. And we know that if a couple has experienced more than two or more losses,
00:32:21
Speaker
If investigations are done, we can find a cause in just under 50% of those cases. So that means that depending on what the cause is, treatments can be offered. And I think it's also just not having that knowledge that, okay, we understand what the cause was and we can do something about it. That can really add a sense of, you know,
00:32:48
Speaker
just relief for the couple to further sort of start trying again with that support. Definitely. We see that as well. And again, speaking from personal experience, that knowledge, if you find something that you can tackle that, there's some kind of sense of control taken back in a situation where it feels like you're out of control and there's nothing you can normally do towards it. I'm saying that there are obviously that other 50% that I have.
00:33:16
Speaker
No reason given to them as to why they've had their losses and even that category of couples who for years goes through journeys of fertility treatments and have what's called unexplained infertility. How difficult is that for them?
00:33:31
Speaker
Look, it's so challenging for couples and also the fertility specialists as well. It's frustrating. It adds that extra uncertainty and it can make it even more challenging.
00:33:50
Speaker
A lot of those people where there is no cause found, there is the option to do some additional, you know, whether that's some medical assistance monitoring hormone levels, you may choose to go down
00:34:07
Speaker
IVF, the IVF path. And I think also in all couples who have experienced infertility and a loss, having that sort of TLC and that additional support and reassurance in the way of whether that be early hormone testing or an early pregnancy scan, if that's something that they feel will help, just I think that in itself can be really valuable.
00:34:38
Speaker
But yes, it is really challenging when
Emotional Challenges Post-Loss
00:34:40
Speaker
we can't pinpoint exactly what is the cause and that's really frustrating and I think it just goes to show that fertility is such a miracle and there is still so much that we don't know and there's no tests that can find out every single part of what's involved. So I do think that additional support and TLC can help
00:35:05
Speaker
Yeah, absolutely. And we know there's a study from Professor Leslie Reagan in the UK around the difference that makes the thing that makes the most difference to a healthy outcome can actually be TLC, which from a really scientific mind to publish that and says a lot in itself.
00:35:25
Speaker
Absolutely love her work. I mean, what do you see then with those patients that come to you that are pregnant after loss or after an incredibly, we say, well, last we also validate like embryo transfers that haven't worked and they failed time after time. And then a couple like that finally come and they're pregnant. And what do you see kind of emotionally and what are the challenges they go through?
00:35:47
Speaker
Yeah, so it's definitely pregnancy after fertility challenges and particularly after loss is just such a different experience to if you had fallen pregnant without those prior losses and infertility. So I think a lot of the time there is less of that sort of carefree excitement. And whilst there might be that sense of relief and hope,
00:36:10
Speaker
that this pregnancy will be the rainbow baby, there's almost always a degree of anxiety and worry. And even if you know the statistics that
00:36:25
Speaker
having had one miscarriage, you aren't at an increased risk of having a second, that does little to allay those fears that you may have another loss. And I think a lot of patients can find that they start to sort of
00:36:42
Speaker
either overanalyze every symptom or lack of pregnancy symptoms. You might feel that there's a loss of trust in your body. And you might find that you get more anxious and you're not doing your usual activities like exercise. And that can really impact on your quality of life. And also, you might not have that same connection to this pregnancy.
00:37:11
Speaker
It's really important to know that pregnancy in itself is a time for increased risk of anxiety and depression just with all the hormonal changes and insomnia and physical changes so we know that one in five pregnant women experienced
00:37:30
Speaker
antenatal anxiety and one in ten antenatal depression. So that's just pregnancy in itself, let alone pregnancy after having experienced previous infertility and loss. And so that's why I really think it's so important for all
00:37:48
Speaker
patients to know that there is support out there and that you should access all the support and that can come in many different forms. That can be finding friends that have had similar experience to you and really
00:38:07
Speaker
you know, talking to them or finding a network such as yourself and the online support groups. And if you do feel that you are getting to a point where the anxiety that you're feeling throughout the pregnancy is impacting on your quality of life, then it's absolutely so important to see your GP to access a clinical psychologist.
00:38:30
Speaker
And Janaya also has counsellors who specialise in infertility and loss, and they are so valuable in helping you navigate all those challenging emotions that you will experience.
00:38:43
Speaker
Yeah, that's it. And also to normalize those emotions. See, in our pregnancy after loss community, a lot of that, right? That when I stand out when I'm pregnant, there's this kind of, there's a little bit of joy, but then there's this, oh, but I'm not actually that happy. I'm actually really worried and full of anxiety. Am I normal? Why do I feel this way? Why can't I attach to this baby? Why am I not doing what I've done in other pregnancies? All of those questions are normalized in that online community of peer support, but I agree with you personally as well. I've been through pregnancy after loss.
00:39:12
Speaker
four times. And some of those times it has worked out, other times it's not. And one of the things that I learned early was to ask for help. And that wasn't just peer support. I might run a peer support organization, but yet I saw a therapist. I had my GP mental health care plan. I also had medication. I went on to anti-anxiety medication. And the difference that made when my baby was finally in my arms was I had all of these coping mechanisms in place.
00:39:39
Speaker
And when I didn't do that with one of my pregnancies that ended in Johnny, I ended up with postpartum anxiety and in a complete and utter mess because I've kind of detached from everything. And I think it's really important that we normalize that there is support and accessing the spot does not mean in any way you're weak. There's no shame in it. There's no failure. It actually means you're really brave because you're saying, this is hard. I need someone or something to help me get through this. And that's okay.
00:40:05
Speaker
I agree. And you know, there are so many conflicting emotions. And as you say, it's really normalizing all those
00:40:14
Speaker
emotions that you really question and go, is that normal? Yes, absolutely. They're all normal emotions. I remember feeling when I was pregnant after my loss, the scans aren't exciting. You just have that scan anxiety and leading up to a scan, you're just so anxious.
00:40:37
Speaker
You get a bit of relief and you may have had previous really awful experiences in scans and things. And just hearing that that is such a commonly experienced feeling and just actually made it so much. You just feel that relief and sort of understanding.
00:40:55
Speaker
Yeah, absolutely. And kind of also having other people that can say, hey, on the morning of my scan, I did this. I left the clinic now. I have anxiety over scans because I've had previous losses. I asked for an appointment first thing in the morning, so I didn't have to wait all day. I made sure I had a support person with me. All those type of little extra things that you can do for yourself.
00:41:16
Speaker
You've just talked on your own experience there. I hope it's okay to ask. Can you talk about it? You're in this unique position where you are a medical practitioner and perhaps you offered support to people prior to your own experience. What's changed in your opinion since going through your own journey or experience of pregnancy loss?
00:41:35
Speaker
Yeah, so look, I really feel that it wasn't until I experienced it myself that you can really understand the gravity of the emotion that you feel. I don't remember there being a lot in the way of education around that, even though it sort of seems
00:42:00
Speaker
obvious that there would be such a difficult time for couples or parents to go through. I don't remember there being a particular discussion around that in GP training or anything, and particularly what's
00:42:18
Speaker
what's important to not say or to say and how to ensure that people who have experienced a loss are actually accessing the emotional support. But I did have a loss and I was just totally
00:42:38
Speaker
I was so shocked at the impact that it shed on me and for how long and all the different emotions that I felt.
00:42:49
Speaker
you know, such an array of emotions. And the only thing that really helped was talking to people who had experienced that loss. And I actually found you guys by Googling you at sort of some odd hour of the morning, or not Googling you, but Googling, is it normal to feel this way? And, you know, one of the resources you have where it lists all the different feelings and, you know, particularly things like
00:43:17
Speaker
Yeah, it's beautiful. Yeah, I love that one. And it's just, you know, things like you don't want to go to your friends, maybe shower, you feel terrible, but that's normal. You can be happy for your friends, but also feel sad and not, you know, find it really challenging to go to those things and just knowing that, oh, I'm not a terrible person. It's very normal to feel that way was just wonderful. And obviously I also accessed
00:43:46
Speaker
psychological support as well because I was going through IVF and then had the lawsuit. That was just incredibly helpful. People shouldn't have to be Googling to find this, particularly as a GP registrar. I really feel that it should be offered to all
00:44:09
Speaker
You know, your resources should be offered to all people who have experienced a loss. And when they're ready, if it's something they want to look into, they can access that support. Yeah, absolutely. We know that one of the things we want to see change in Australia is a national bereavement pathway. We want to ensure that everyone that leaves any setting within a healthcare system who's been given the diagnosis that their baby has been lost, that they're given a referral.
00:44:34
Speaker
because we know that in that initial shock, Miss Weaver might give you something and you might just completely put it to one side and forget about it. It's the responsibility of every practitioner who sees a woman and her partner, her partner is worthy of support too, to give her referrals to support and it's not a hard thing to do and it can make a difference because you wear this
00:44:54
Speaker
professional coach that we look up to you. And if someone like yourself gives us that, it's almost a permission slip to Greek and access support, which society doesn't give you for miscarriage. Society says to you, at least it happened now. At least you know you can get pregnant and say you don't think you're worthy of support. So it's really important that medical practitioners reverse that and give us that referral.
00:45:18
Speaker
I love that. Thank you for sharing your journey as well. We're asking everyone that comes on.
Training Healthcare Providers for Better Support
00:45:25
Speaker
The miscarriage rebellion is intentionally telling stories, underpinning them with evidence and empathy, but it really is to invoke empathy and to incite some action. For too long now, the dial hasn't been quick enough. Women are not getting the support that they deserve. We're being minimized and it's an underfunded, under supported area in the health system.
00:45:44
Speaker
So if you could change one thing for parents who go through this experience today, tomorrow or forever, what would that thing be? So Sam, I do agree with you that my wish would be for all bereaved parents to receive that support.
00:46:02
Speaker
from the outset, the first interaction with healthcare providers. And I think that there needs to be better training for all healthcare providers. And that's sonographers, GPs, nursing staff in the hospital, because there are just too many
00:46:23
Speaker
stories where platitudes have been offered or losses haven't been acknowledged and patients haven't been provided with the appropriate resources so that they can feel
00:46:35
Speaker
have that follow-up support. I think as healthcare providers, whilst we can't change that outcome of a miscarriage, we can make a huge difference in how that loss is actually experienced. Whether you feel supported and validated or if you just feel really lost and lonely and
00:46:57
Speaker
And so I think that we can really, there's such a long way to go in terms of how healthcare providers can support patients in that way. And I don't think that healthcare providers mean to be insensitive, but I just feel that there are some, you know, a lot of those platitudes might be set in with best intentions, but it really doesn't help. And I think just some education around that would be really helpful. And can I just say that
00:47:27
Speaker
I just want to thank Pink Elephant because you guys have just really changed how society understands the physical and emotional impact that pregnancy loss can have and your campaign for leave for loss has just been so immensely appreciated. I think that's just wonderful.
00:47:50
Speaker
As this is a bonus episode, we don't have our usual unpacking of themes, but we want to again jump on here and let you know that there is support there for you. Pink elephants is here for you. And that we do want to cover a little bit around the health system here. We know that within pink elephants, we continually share our experiences and the experiences of brave parents that we support within the health system.
00:48:14
Speaker
to advocate for change, to raise more awareness into the need to change some systems so that women are not being met in a way that compounds the trauma that adds to the trauma. We know that things like language matter. We know that things like where we are situating women in waiting rooms with other pregnant women makes a difference.
00:48:37
Speaker
We know that gaps of moving from sonography clinics through to GP, through to e-passes can sometimes feel like you're in this pinball of a medical management system, but no one's actually saying, hey, are you okay? We know how hard that is. That's why Pink Elephant is here for you, because we're here to provide that early intervention peer support. We've been there, we understand, we get it.
00:49:00
Speaker
and our peer support companions are your safe space
Support Networks and Closing Remarks
00:49:03
Speaker
to be met with the empathy and understanding you deserve. So if you're listening to today's episode and you found it hard and you're trying to reach support, please head to pinkelephants.org.au. There is a wealth of support open to you. Hopefully it can also help to empower you to have conversations with your health professionals around your needs and what you want going forward to support you. Know that we're here for you every step of the way. You are not alone.
00:49:30
Speaker
Today's episode may have brought up some feelings for you that you need some support around. That's totally okay. Head to pinkelephants.org.au to find access to our circle of support, your safe space where you can be met with empathy and understanding throughout all of your experiences of early pregnancy loss. We're here for you. You are not alone.
00:49:51
Speaker
If you enjoyed listening to The Miscarriage Rebellion, please help us by leaving a five-star review wherever you listen to podcasts. The Miscarriage Rebellion is a Pink Elephants podcast produced by our friends at Three Piece Studio.