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Episode Five: Friendship after Pregnancy and Infant Loss with Jade Redmond and Rachael Casella
825 Plays1 year ago
This week on The Miscarriage Rebellion we are joined by Jade Redmond and Rachael Casella, who are incredibly generous in sharing their heartbreaking stories of pregnancy loss, termination for medical reasons and infant loss.
Experiencing these losses can be, as we know, extremely isolating and difficult, but in spite of all their trauma, these women have formed a beautiful friendship, whilst being open in sharing their experience with others in the community, raising awareness and fostering empathy for others that have lost their babies.
This episode contains a discussion around multiple pregnancy losses and infant loss. If this feels like too much for you to listen to right now, we recommend skipping this one and only listening when you feel ready.
✨Rachael’s Book - Mackenzie’s Mission
We also hear from Keren Ludski, CEO of Red Nose Australia.
Read research on infertility and stress
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
- 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 'Miss Coach Rebellion'
00:00:03
Speaker
Welcome to the Miss Coach Rebellion. I'm Sam Payne, CEO and co-founder of the Pink Elephant Support Network.
00:00:10
Speaker
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. 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
Meet Jade and Rachel: Advocates for Pregnancy Loss Awareness
00:00:33
Speaker
conversation. And we're here to make lasting change.
00:00:37
Speaker
Welcome to today's episode where we are joined by the phenomenal women, Jade and Rachel. Jade and Rachel are incredible advocates in this space. They continue to show up and share their experiences of pregnancy loss and much, much more via their social channels. They raise awareness, they foster more empathy, and they challenge the false narratives that exist around pregnancy loss.
00:01:02
Speaker
But we've brought them here today because what they exemplify is how friendships can change during these experiences.
The Emotional Journey: Preparing Listeners and Providing Support
00:01:09
Speaker
And whilst we know firsthand how we can lose friendships and that can be incredibly difficult and isolating, what's really beautiful here is how these two women have connected and how a shared mutual experience of pregnancy loss can be something that has brought them together to foster a meaningful bond and to be incredible, beautiful friends for each other.
00:01:29
Speaker
Really, really grateful to have Jade and Rachel here today, acknowledging that this is an incredibly hard interview. There are a lot of parts of this that are challenging to hear, but we need to hear them. We need to not shy away from these experiences because they are real and these experiences deserve to be heard.
00:01:51
Speaker
But acknowledging that if today's not the day for you, then maybe you save this one for a later time.
Jade's Conception Journey and Ectopic Pregnancy
00:01:56
Speaker
And acknowledging that we also put a link to support at the end of all of our episodes. And ultimately, we're here to shine a spotlight on them so that we can foster more empathy and understanding to the experiences that these women go through because they are very real and they deserve to be told. And I'm incredibly, incredibly grateful that they chose to share their stories with us.
00:02:18
Speaker
So without further ado, let's jump in to Jade and Rachel's story. Jade, I have followed your story on socials for a long time now. And a lot has happened. You are an incredibly generous voice in this space.
00:02:35
Speaker
The way that you articulate with words and what you say about your experience to hopefully change it for others should be commended. You're incredible. And I am so grateful we've got you here today.
00:02:49
Speaker
for the listeners of the miscarriage rebellion. If you could take some time to as best as you can, we know it's hard, but to summarize, if you like to share your experience of the different types of pregnancy loss and your experiences that you've been through, that would be amazing. Thank you. My gosh, Sam, that was a real intro. Thank you. You're going to make me cry. Yeah. I mean, you're not wrong when you say it's been.
00:03:14
Speaker
a long time. It certainly feels like it's been a really long journey to where we are finally. So my conception journey started in 2020, where we decided we wanted to start building, trying to conceive. We'll know that feels like a very long time, month after month.
00:03:34
Speaker
getting a period, that negative test starting to spiral and think, will this ever happen to me? And so when I finally got that positive test, it was a very, very faint line. And so I was having to squint and use the pregnancy check app on the phone, but it was a positive test.
00:03:50
Speaker
However, even though I'd sort of been wanting this for so long, something felt really intuitively not right. Like I wasn't able to rejoice in the excitement. I felt scared telling people and I didn't know why. I was sort of like, something's not right here. And it turns out a week later, it's only really having known I was pregnant for a week.
00:04:15
Speaker
I was on a work course online and it wasn't bright red blood, it was this sort of dark roundish blood which can be a sign of something called an ectopic pregnancy for those that aren't aware of what that is. It's when the egg has attached to your tube or somewhere elsewhere than the uterus where it shouldn't really be, it's implanted in a place where it can't grow.
00:04:43
Speaker
and they're never viable. So I rang my GP and she didn't want to alarm me on the phone but she really pushed for me to go and get a scan as quickly as possible. So the next morning she was able to get me in privately somewhere and they did the ultrasound and they saw the embryo in my left fallopian tube.
00:05:04
Speaker
and pulled me into a meeting room with my partner. And the doctor got on the phone and she said, honey, I'm really sorry, but you need to go straight to emergency. You can't even go, but you never really lose that moment where the world, like the floor just parts ways beneath you, you know? And strangely enough, I'd had someone tell me about their own ectopic pregnancy a few weeks before. And I remember physically being really moved. I never want to go.
00:05:29
Speaker
So I'd actually looked it up and done research on it. There's all this weird synchronicity sometimes in pregnancy loss. Because I know a lot of people that have had ectopics, they've never heard of them. So the whole process is very overwhelming in terms of the information and the decisions that you have to make on the spot. Whereas I felt quite prepared.
00:05:47
Speaker
I'd read all about it. So we went to emergency. I was taken straight in. And I just remember laying on the bed there, just tears streaming down my face as these poor nurses trying to take bloods and was unsuccessful five times and just felt terrible. The whole thing's a bit of a disaster. And yeah, my focus is that long before pregnant. And the first thing you ask is, why? Why me? Why is this happening to me?
Jade's Subsequent Pregnancy and Genetic Disorder Challenges
00:06:13
Speaker
So with the next topic,
00:06:16
Speaker
They had recommended that I have the surgery to remove the pregnancy. And while waiting to go into that surgery overnight, my fallopian tube burst because as the embryo starts to grow, it's not big enough to sustain the growth. And so the internal bleeding started happening. I was in incredible pain, rushed down to have the surgery.
00:06:39
Speaker
and left that surgery with one tube left at, I think I was 37 at the time. So my age was something that was really playing on my mind. And I was like, wow, okay, great. I've got another thing against me now. In the surgery, they checked my right tube. So they flushed it with the dunge and the doctor said,
00:07:01
Speaker
you did before. It's definitely reduced, but not by half. But you don't really listen to that. You think, oh, this is going to be even harder now. So you go home and you're in a lot of pain. It's major surgery.
00:07:18
Speaker
So you're dealing with the physical recovery and trying to process what the hell has just happened. And that at the time, yeah, felt like the hardest and worst thing that had ever happened to me. And I was fortunate in that people did really show up, like a lot of flowers were sent to the house. My parents came over straight away with food and were just devastated for us.
00:07:43
Speaker
But when I think back, I guess in terms of the larger spectrum of community and whatnot, it was forgotten quite quickly. We're a course about mindset in pregnancy and tried all these things because I was really struggling. Seeing babies, seeing pregnancies, thinking this is never going to happen for me. I'm too old and now I've got one tube. But lo and behold, we actually fell pregnant four months later in
00:08:11
Speaker
November of 2020 and pregnancy after loss. It's a whole other episode. I think it's just horrendous. Yeah. So we went for a very quick early scan to make sure it was in the uterus. It was tick.
00:08:27
Speaker
felt like I could relax a little bit over Christmas when we started to tell family, I'm in every toilet trip. I'm sure this is the same for anyone that has had that experience of seeing blood. I would just tremble and avoid the bathroom as much as possible, but then it'd go in like a hundred times to also check. We had to relax after our 13 week scan. We had that early anatomy scan and everything was looking really good. And I was sort of in that, um,
00:08:55
Speaker
mindset at the time that once you pass the 12 weeks like you're safe you know that thing that society sort of talks about like the risk of miscarriage has obviously reduced greatly and I didn't know there was a world beyond that of lost at the time so I started to relax and really enjoy it we did our gender reveal found out we were having a little girl and then at my 19 week morphology scan I didn't even take my part
00:09:23
Speaker
That's how comfortable I was that everything's okay. And when we were in that scan, it was taking a really long time, which I'm normally quite a clued on person, but I just didn't feel sending, you know, texts to everyone. Oh, she's being very cheeky. You know, we, we can't see the brain. I've got to go back.
00:09:42
Speaker
And so I went back and then she was able to see it more clearly. And then she said, I'll be back. And then two people walked into the room and that's when it clicked. And I think I've heard that it's quite similar for a lot of people. And when they sit down on the bed next to you and put the hand on your leg. And that whole pregnancy as well intuitively, I felt like this is too good to be true.
00:10:07
Speaker
I had been googling genetic conditions or serious disorders in babies because I'd found out about genetic carrier screening after we fell pregnant with her. And I started freaking out that we hadn't done it. Um, you just can't explain. And she sat down next to me and said, sweetheart, I'm really sorry, but there's something wrong with your baby's brain.
00:10:32
Speaker
We don't know what it means. We're not experts before Good Friday. So everything was closing down the next day, hospitals included in terms of the maternal fetal medicine department. They said someone will call you next Tuesday to give you more information and book in with the hospital. Now, when you opened to Sam, you said, you know, I'm quite open and I speak openly. I'm a confrontational person. Like I don't have
00:10:55
Speaker
any issues and sort of speaking up and I said I'm not leaving here until you give me more information that's not good enough you can't do that to me um so they will try and get our doctor in house to call you um so I sat in their waiting room with a cup of tea like an hour until she called and that's when she started talking about potential genetic disorders um and what they could mean and this was just a whole world that I had never heard of um that was just so confusing to me
00:11:25
Speaker
the time. I will speed up a little bit because it's a very long story. We're talking appointments at maternal fetal medicine, amniocentesis, had to wait for an MRI. Now, fetal MRIs are useless before 24 weeks of the brain, so we had to wait until 24 weeks. It was only 19 when we first got the new
00:11:44
Speaker
five weeks of this. And then we had to wait a week for the actual thoughts. Yeah. Yeah. Yeah. Yeah. I don't know how we survived that. I was developing severe panic attacks. I couldn't sleep.
00:12:00
Speaker
It's a lot, especially when you're already, you're still pregnant and you're growing a baby and that's taking a lot of you at the same time. Were you offered any mental health support? Were you offered any support from that side of things? Or was it all medical management? The hospital, which I'm now an ambassador for, as you know. You can say the hospital is absolutely fine.
00:12:22
Speaker
Yeah, they were amazing. One of them called me in between all those appointments just to check in and see how I was feeling and offered me support there. I sought out my own private therapist as well because I knew that this was just so much bigger than anything I'd gone through and would need that professional support. So yeah, I was fortunate in that sense, but I do know
00:12:50
Speaker
how lucky I am because I know that a lot of families do not get that same care in a hospital setting sadly and are not offered that support. So eight weeks later got called back to the hospital, the MRI results are in now. We had been told in the initial ultrasound because the equipment and technology at the hospital is obviously
00:13:11
Speaker
exceptional and can see a lot more than your private ultrasound places. And they said, look, it could be a really big cyst in the brain that will shrink and disappear. Or it could be a disorder that these are the things we're looking at the part of the brain that she had that was abnormal affects motor function. So everything to do with speech, eating, swallowing, walking, moving.
00:13:37
Speaker
So we walked into the room, we'd had an amnio, and that came back clear. So we didn't think it was anything sort of genetic at that point. But the genetic doctor was in the room, and he was the first one I noticed. And I thought, what are you doing in here? We've cleared everything with you. And there was about six people in the room. And I just sat down and I just went, no, it's good. All my prayers and hopes and wishing, it hasn't worked.
00:14:07
Speaker
Antonio Shand, the doctor, the head of maternal bacterial medicine sat there and said, you know, we've got the MRI results back and it's actually revealed something more serious than we could actually detect on the ultrasound. It's the one thing I like to keep sort of private because it is a spectrum. But I just don't need people, you know, googling and sharing their opinion on what they think I've done when I know, I know exactly how
Impact of Loss on Life and Relationships
00:14:33
Speaker
serious it was for her.
00:14:34
Speaker
Um, and I looked at the genetic doctor and I said, that's really bad, isn't it? Because I'd be down at Google rabbit hole for eight weeks. There probably wasn't a single thing I hadn't read about or looked into. So I had heard of this. It's very rare. Um, and he just nodded his head and he had like a real like sorrow in his eyes, looking at me like I'm, I'm yeah, I'm really sorry. And, um, you know,
00:15:00
Speaker
Craig and I, my partner, we'd had to have discussions already by this point of what would we do if we found out she was really unwell. And the genetic disorder that she had is really horrible in terms of quality of life. It's not a life. It's organ failure, blindness, inability to eat or breathe independently. No communication, so never talking or walking.
00:15:29
Speaker
can be fatal by seven years old. Like that's the average age that the fatality rate someone with that genetic disorder lives. And you're forced to question the difference between life and living. Why do we enjoy life? What is living? I would not want to be born into that life. I couldn't possibly do that to my own child that I loved and wanted so dearly.
00:15:59
Speaker
And so we made the very, very, very difficult heartbreaking decision to say goodbye before she was ever brought into the world, into a life like that, that would have just seen her in hospital. A vegetable was the word that was used.
00:16:18
Speaker
Yeah, and so it's so surreal to me now. I see it in Rachel all the time. Did that happen to me? Like I think you push it somewhere in your brain. It's a place you just don't have to go all the time and you only go there sometimes, but it sort of feels like someone else's story. You're telling it most of the time. I think that's how you survive. But yeah, you basically book an appointment to come in and
00:16:45
Speaker
give birth to your baby and say goodbye forever. That has now been the biggest thing that has ever happened to me. In my experience, the topic was really, really horrible and my grief was enormous. The longevity of the experience of Harper's diagnosis and saying goodbye and now having held her and never getting to hold or see her again,
00:17:16
Speaker
there's not an inch of your life that a loss like that doesn't impact. Yeah, so, you know, relationships suffered, my whole world changed. I went on to have another very early pregnancy loss.
00:17:37
Speaker
at Christmas, so she was born in May of 2021, fell pregnant again in December, and I thought, oh, this might be a nice Christmas gift for us, and then had a chemical pregnancy Christmas week. So I can't even tell you what it's like having to go into Christmas without your baby for the first time already. And then having another pregnancy loss Christmas week. At this point, I was just like, the universe hates me. Like, what have I done?
00:18:07
Speaker
to have to deal with all of this. And I don't know where you find that internal drive or hope to keep going. Like a lot of people ask me, how do you keep going? How do you get past the fear of it happening again? And it's really just sitting with yourself and saying, okay, is my desire to have a living baby bigger than my fear? If it is, then you have no choice. You have to keep going.
00:18:34
Speaker
So we did and we now have River, our living Earthside baby, but yeah, I am not the person I was before this journey. That's for sure. And the people in my life, some have stayed absolutely and been incredible, but a lot of them are new as a result of this journey. And it's something I really struggle with internally because I've
00:18:59
Speaker
been so enriched with beautiful love and friendships and support as a result of Harper leaving us, but I wouldn't want to give those friendships up now. It's really hard to get my thing. I don't want her to be the sacrificial lamb that gave me all these incredible things, but I also couldn't live without these women in my life as well. So yeah, that's a whole other
00:19:25
Speaker
Jade, I'm just so sorry. I'm so sorry for your losses. Congratulations on River and the other babies because they still were our babies when they arrived, right? Sometimes we don't actually have the acknowledgement because we're dealing with so much of the loss before we even got a chance to be congratulated for their arrival in our tummies.
00:19:50
Speaker
I want to talk to you before we get to Rachel's story, who's very patiently waiting and obviously very emotional and just, you could just feel her with you through that whole story. Um, I want to talk a little more about those specific life impacts. You know, you have a job, you had a life, you had things moving through that I'm sure you thought would be a part of those babies journeys. And then this journey takes a turn and it all changes.
00:20:20
Speaker
I want to hear a little more about the friendships or the relationships that did start to change, maybe even work or what it looked like for you and what that was like for you. Thank you.
00:20:36
Speaker
I think I've been really lucky in that the majority of people have really shown up for me through those losses and continue to do so because we talk a lot about compassion fatigue and that can be really easy to feel with someone that's gone through pregnancy and baby loss. You just get tired of supporting that person because it's never ending, but that's the point, isn't it? It's never ending with a bit every day.
00:20:59
Speaker
Um, but there were people, you know, that I thought would show up for me and I literally got one text message after Harper was born and then like silence for a year even. Um, and then they sort of tried to creep back into my life and let's catch up and no, no way. Sorry. I'm quite brutal like that. Like Rachel and I are very similar in that sense in that.
00:21:23
Speaker
We have really high expectations of people but it's because we feel that we give a lot as well and there's some things that at this point are just unforgivable in terms of not being there in a really present way after what we went through. So yeah, some friendships definitely unraveled and there was never really a full-blown
00:21:47
Speaker
argument about it as such, or I just stopped giving it any energy or time. When they reached out, I just didn't respond. We have very limited energy. I was just thinking that. Yeah. Thinking about where I put that energy.
00:22:07
Speaker
work. I think the biggest thing for me and the best way to describe it is all of a sudden life became really terrifying. So something as simple as going up the road to get a coffee, I had to mentally prepare and pull my armour on for. And I don't think a lot of people realize this
00:22:24
Speaker
Every day, you are basically standing there waiting for the next punch from someone that doesn't mean it or know any better. But in those early weeks, I remember the first time someone asked me if I had children after Harper was born. I was standing at a cafe. There was about 20 people outside. We were in the thick of lockdown, so we went through our grief with Harper during the thick of COVID and lockdown.
00:22:48
Speaker
And we'd just gotten our puppy reef to be our emotional support animal. And a woman was sort of doting over him and then said, do you have children? And I just wasn't prepared for that question. And I said, no.
00:23:05
Speaker
I was 20 people standing around and I wasn't ready for them to all hear. And then she said, oh, lucky because you wouldn't be able to have children on top of that puppy. And I just walked home and cried. I felt so guilty that I didn't acknowledge Harper to this person. And I felt so horrible that she said that to me, like, lucky that you don't have children. And I don't think there's a single day in where two years on now from her
00:23:34
Speaker
being born that I haven't caught like a sentence like that or someone saying something that has hurt but you have to build I think a lot of resilience and a really thick skin around it. So you shouldn't have to right? Yeah you're right you shouldn't have to but you do to survive. Yeah if you want to be a functioning part of society again that doesn't
00:24:00
Speaker
you know, cry or break down at everything around you, seeing babies. I remember someone said, for a walk, you'll feel better. And I went for a walk and there was a mothers group with like five mothers and they all had little girls.
00:24:15
Speaker
And I was like, go for a walk. They said, you'll feel better. No, I didn't want to leave the house. After lockdown, we caught up with some people that we hadn't seen in a while. And this was maybe only a couple of months after she was born. And one of them said, oh, look how cute that baby is.
00:24:36
Speaker
And I just sat there and thought, oh my God, people really don't understand what I'm going through. That one of them pointed to a pregnant woman doing a photo shoot down by the beach and said, oh, look, look at that photo. Like, I don't want to look at pregnant women or babies. Like, God, could I want to look at that right now? And it was just this huge eye opener to me that I literally lived on a different planet.
00:25:01
Speaker
at this point. It feels so alienating and that's that whole thing again that we talk about with pink elephants as well, the value of connecting with others who get it. Because whilst we've all got our own journeys and they're very different, but there is a sense of knowing and understanding that comes from people who've walked similar journeys of loss. And I think that's why we gravitate to each other. I only started to then feel safe being around who I call my people now. They're my people.
00:25:30
Speaker
They will never get tired of holding space for my griefy days.
Rachel's Parallel Journey of Pregnancy and Loss
00:25:35
Speaker
They know how hurtful it is to say something in the wrong way or they know what it means to send something meaningful on
00:25:45
Speaker
your child's birthday that you'll never see. All these things, you don't have to explain how it feels or explain why you're acting a certain way, or it's just this beautiful, enriching, fills up your cup rather than depleting. And I really
00:26:02
Speaker
I isolate myself now from people or experiences that I know will deplete me and just don't feel as safe in society. And Jade, it sounds like as you've called yourself, you can be quite a confrontational person, like you'll go in to bat.
00:26:21
Speaker
I'm sure there is another side where you need to not be that, and that the assumption is what you are, not what you have to fight for, per se, because that energy is just, as you've mentioned, it's just a real sucker, like it real sucks you dry. Rachel, before we jump into how you and Jade actually connected, because I'm sure people want to hear that story as well.
00:26:46
Speaker
You and I connected years ago as well and have also followed and witnessed a lot of your journey and the highs and the lows and how much you have been through and just like Jade, how you take what's happened to you.
00:27:01
Speaker
and you find a way to share it that can help others. Again, I just want to commend that because it's not an easy thing to do and you do it so publicly in a really beautiful way. Again, the way that you articulate a lot of this journey will make a massive difference to how other people respond to those going through similar journeys. But if you could take those listeners who perhaps aren't across your journey through what you've been through, that would be amazing.
00:27:30
Speaker
Oh, thank you. I've started to actually find it a little bit difficult to say my journey because it comes out just like almost like an unemotional story that I'm telling because I've said it so many times and I've had so much loss, it's almost like it's become more statistics.
00:27:58
Speaker
So it started with trying to get pregnant on our honeymoon. My very Type A personality, after two months of trying, I went to a fertility specialist and forced my husband, Johnny, to get his sperm tested. I had my AMH-8B.
00:28:26
Speaker
A-H-M. Check. I always get that one confused. Right. They always say it like the, um... The health insurance, because I have, yeah. And you use the health insurance a bit, so I really do relate. I literally just purchased some for travel insurance once a week, which is why I've got it wrong.
00:28:46
Speaker
Yeah, we got all the checks and we ended up actually doing, I like to always say this part because I think it's really important for people to know if they don't know about it. We actually got ovulation tracking, which you can get three months for free through Medicare. So that's really important. So it's cheaper than using those little smiley sticks. I'm pretty sure I have kept those companies in business.
00:29:11
Speaker
Um, but yeah, it's, it's, it is a bit of a effort. You have to get blood tests regularly. Um, but we found out that we were ovulating. Well, I say, wait, I was ovulating, but I'd like to not exclude my partner. Um, but yeah, I was ovulating on day eight instead of day 14. So crazy early. Um, but with that information, we felt pregnant straight away.
00:29:35
Speaker
We were really excited but it ended in a miscarriage. I had about six or seven weeks so relatively early but enough obviously to cause lots of heartbreak. So I had a D&C like Jade.
00:29:59
Speaker
That felt really important in my story back then. And that's not to disregard anyone who has gone through a miscarriage, but just in the grand scheme of what I then went through.
00:30:16
Speaker
It hurt, but we started trying again the very next month and got pregnant straight away with that beautiful ovulation tracking. And that pregnancy ended up being our daughter, Mackenzie. The, well, I mean, I'm sure everyone says this, but the most beautiful girl in the entire world in my eyes. She was perfect until
00:30:46
Speaker
Until very quickly, she wasn't.
Advocacy for Genetic Screening and Mackenzie's Mission
00:30:48
Speaker
At 10 weeks old, she was diagnosed with a terminal condition called spinal muscular atrophy, something we had never heard of before. And it turned out that both my husband and I carried it. And unknowingly, we had caused this in her.
00:31:10
Speaker
a very serious condition that it works on your motor neurons and it stops the ability of a person being able to move their body so it starts with not being able to move your arms and your legs and then it starts working on the organs not being able to swallow and not being able to breathe.
00:31:34
Speaker
And eventually they pass away. So we were told that we had a couple of months left. The average age Vanessa May baby is eight months old. So we
00:31:49
Speaker
through ourselves into living the best life we possibly could with her. We travelled all around Australia, gave her as many experiences as possible. We walked in dinosaur prints.
00:32:05
Speaker
Took her on a helicopter, a hovercraft, every type of transport we could. Aquarium, zoos. We celebrated monthdays every month knowing she wouldn't make her first birthday.
00:32:22
Speaker
and we spent time with family. She passed away in our arms at Sydney Children's Hospital when she was seven months and 11 days old. She caught the common cold and
00:32:44
Speaker
One of her lungs collapsed because she couldn't move the mucus. Let normally people move by coughing and I should cough. So yeah, she spent five days in hospital. Her lung actually ended up getting better and we actually thought we were going to be able to take her home but
00:33:09
Speaker
She had had to have a feeding tube and we think that caused an internal blade. We tried giving her a black
00:33:28
Speaker
um but it wasn't clotting and she just kept bleeding so we had to make the decision to take her oxygen mask off and she took two little breaths and then she was gone um we left the hospital without her and
00:33:57
Speaker
without a piece of us. You're gone forever.
00:34:06
Speaker
We found out about the genetic side of things. We found that really difficult because we were researching and realized that we could have just done a simple saliva swab to find out what we carried. And while we never would have taken a second that we had with Mackenzie away, those five days in hospital watching her,
00:34:31
Speaker
You wouldn't ask someone that you love to go through that just so you could be happy. Just so you could have them here.
00:34:41
Speaker
So a large part of our story centered around genetics and making sure that someone didn't go through what we went through. And we started advocating and campaigning for change and wanting that genetic carrier screening so that
00:35:00
Speaker
that saliva swab to be available to everyone who was planning a pregnancy or an early pregnancy. We started doing that a month after Mackenzie was diagnosed. We have a big research project called Mackenzie's Mission.
00:35:22
Speaker
It's a very long story on its own, but we've got some really, the really good news is that in November, the top three genetic conditions will now be able to be screened for for free on Medicare, which is amazing. And we're not done yet. We're trying very hard to create a national screening program that will screen for a thousand genetic conditions. So I'm hoping before Mackenzie's 10th birthday, that we'll be in Australia.
00:35:54
Speaker
We had found out because of the genetics that we had one in four chance of any future babies having the same condition that Mackenzie had. So we started down the path of IVF actually before we lost her in the hopes that we could have a sibling that she would meet. We knew that that was very unlikely but
00:36:19
Speaker
We actually got the call a month after Mackenzie died to say that the genetic test required for IVF was ready. That was very hard to get that call, but also
00:36:34
Speaker
We didn't know how long to wait, we were getting older. And we very naively thought that IVF was gonna be very easy for us because we have no fertility issues. We thought that we just, what we do a round of IVF, maybe get 15 embryos, have our babies, and then we donate the rest to other couples who needed them. That was our plan. And it really didn't go like that, I know.
00:37:01
Speaker
hearing Jade talk about Christmas. We went into that Christmas, Mackenzie passed away in October.
00:37:09
Speaker
We started the IVF process in November and we found out over, I think on Christmas Eve, maybe the day before that, that our first round of IVF caused us to have absolutely zero embryos. So we went into Christmas without Mackenzie and our first round of IVF not giving us anything, not even one blast assist to be tested.
00:37:37
Speaker
We did five rounds of IVFs initially and got one healthy embryo and that was it. I couldn't bring myself to transfer that embryo because I felt like we wanted to have two more children and the idea of, I just knew that my age was a big factor in what was happening with IVF. So we, um,
00:38:03
Speaker
We actually had a break for a minute and we got pregnant naturally, thinking that that would be easier.
00:38:11
Speaker
Um, uh, we got pregnant very quickly and found out that, um, so with going, um, getting pregnant naturally, we had to wait and have a CVS at 12 weeks and five days. Um, after a couple of weeks waiting, we found out that, um, it was another little girl. Um, and she also had SMA, uh, he called her Bella.
00:38:39
Speaker
And we decided to medically terminate that pregnancy. We were, I guess, lucky in a way that we had found out before needing to birth her because even though there's not a category of loss
00:39:03
Speaker
there is in my mind a category of levels of trauma. And I didn't want to burst. They didn't want to birth her. So we had a surgical termination and then
00:39:23
Speaker
uh, went back into IVF. We did another three rounds and then I got deep vein thrombosis from one of my rounds of IVF and that got canceled. And then we did another round of IVF. I think we're up to eight or nine by this stage.
Emotional Complexities of Pregnancy After Loss
00:39:42
Speaker
And we finally got enough embryos. We got, I think we had three.
00:39:49
Speaker
We transferred one, it failed and the devastation when it took us so long to get those embryos. We transferred another and it failed. And we wanted to know why we had these genetically healthy embryos and they were failing. So I had a laparoscopy and we found out that I now had stage four endo. We removed that.
00:40:17
Speaker
and we put our final embryo in and it took but because we were so nervous and we knew too much even though it was a genetically healthy embryo we did a genetic testing we did another CVS and then nipped
00:40:43
Speaker
Well, we did a NIPT and it came back with an abnormality. And then we did a CVS and it turned out that there is 5% inaccuracy in IVF genetic testing and we had fallen into that 5%. So we had a little boy who we called Leo, who actually didn't have SMA, but had a severe chromosome condition.
00:41:08
Speaker
I don't share the chromosome condition because I don't need people's opinions on whether we made the right or wrong decision, but we terminated that pregnancy, that little boy Leo. By this stage,
00:41:32
Speaker
We decided to do one more round of IVF and then we were going to go back to trying naturally. And we got an embryo that turned out to be our little babies. Who's now two and a half years old. I should also say amongst that we also had seven other miscarriages or early miscarriages, chemical pregnancies.
00:42:02
Speaker
So yeah, that was another layer. When Zach was 10 months old, we wanted to try again because we knew how long it had taken us to get pregnant. So we went back to IVF and that was painful in its own way because I had to wean Zach before I wanted to because I needed my hormone levels to be low enough to be able to do IVF.
00:42:31
Speaker
And that was just another layer of grief, another was taken away. So we started IVF, but I think just before we started, Johnny and I thought, we don't have the money for this. Maybe we'll try naturally. So we had sex once and then we freaked out about our decision and we went, no, we've got to go through IVF. We can't do that again.
00:42:57
Speaker
did pregnancy tests, wasn't pregnant, started IVF, and then a week into IVF, found out we were actually pregnant. And that baby, after waiting the 13 weeks to be tested, we found out, and then the two weeks waiting for the test results, we found out that this little bubba was another boy and was healthy. And I don't know how miraculous that was, but yeah.
00:43:29
Speaker
I don't really know the answer of how many children I have, but I've birthed three babies, well, Mackenzie, Isaac, and little Joshua, who's now eight months old. There is so much.
00:43:49
Speaker
You know, that experience is so, so sorry for everything that you've been through. It's one of those where you don't even know which parts to start to kind of look at. And I resonated with what you started that whole, when you've shared your story so much, you can feel almost mechanical and statistical because you do, you give so much by sharing your story, but that also takes its toll on you.
00:44:15
Speaker
I want to add a layer here of that fact of, yes, we want to inspire people to share their stories, but Stacey and I have talked about this with some other guests as well. There are boundaries around that. You too have beautiful boundaries about what parts of your story you share and what parts you don't want to open up. That's okay. There's other things to consider as well about where you show your story and who weigh them for what purpose and for when you're ready.
00:44:37
Speaker
So again, thank you for the whole that you do in showing and I see how hard it can be to do that. I also want to unpack something that I think will be really interesting to the listeners. We will move into how you two met, but I'm fascinated by this as well.
00:44:55
Speaker
You went really quickly into IVF and I understand there was that biological clock ticking and that makes that part of that decision as well for many women and partners. But you did go in with that narrative of IVF will be easy. What part do you think needs to change in society? Because I feel like, I'm trying to get my words around this, but I feel like a lot of people think that IVF is a tick box that you go in, you have IVF and you'll have a baby in nine months.
00:45:23
Speaker
What can we do to kind of challenge and change that? Yeah, I think there's a few things. For starters, I wish that people had or someone had told me that usually the first round of IVF is where they're trying to figure out a baseline. It's not very common for your first round. I remember telling our friend Kira that and
00:45:49
Speaker
I really felt like a Debbie Downer. I really felt like I was sort of taking the shine off of something that was going to potentially give her her children, but I just wish someone had told me that. I also wish that people knew that IVF isn't just for people who have fertility issues.
00:46:14
Speaker
because there's genetic reasons, there's illnesses like cancer, like there's a whole lot of reasons that IVF occurs. I just think that there needs to be more conversations around
00:46:33
Speaker
how many rounds of IVF it takes, how much money you need to have. Um, the fact that freezing eggs and freezing embryos doesn't mean a baby. Um, there's so many elements around it that I think that we should have more conversations about it. Um, IVF is incredible, but it is not, it's not a given.
00:47:03
Speaker
It's one option, yeah. Rachel, I'm sorry, and I really just acknowledge everything that you've said and gone through, and I'm also super grateful for you sharing all of it with us, but in general. I talk a lot about
00:47:23
Speaker
And I think particularly through fertility challenges, pregnancy loss, there is this very unique understanding of holding two feelings simultaneously.
00:47:35
Speaker
I think a woman that goes through this knows it in a way that is so unique. And when you've explained your last pregnancy as miraculous, and then you also have to hold space for a pregnancy that was almost, I don't want to put words in your mouth, but the opposite, like this kind of devastation.
00:47:59
Speaker
I wanted to just ask you to speak to that a little of how that is to live with. And if you could explain what that is like for you to really have to hold those two things at the same time, that one doesn't cancel out the other. You know, and someone thinks that you've had this miracle, but then it makes it the other part change or evolve, or even someone would expect better.
00:48:28
Speaker
I wanted to see what your take was on that and how you cope with that. I feel like my body and my mind and my heart is permanently split. I'm in multiple places all at once and it is really overwhelming.
Mental Health Impact and the Need for Support
00:48:49
Speaker
It's something that I'm working through or trying to work through. I was saying to Jade the other day,
00:48:59
Speaker
I have been pregnant, breastfeeding, having surgeries, injections, everything every month for seven years now. And I'm finally here with my babies in my arms. And I feel like the last seven years is starting to
00:49:24
Speaker
creep out from behind the door that I've shut it all through because I was in fight or flight and the adrenaline is starting to wear off. And I'm so torn at the moment and it overwhelmed in every aspect because I am so aware of how lucky I am having my beautiful boys.
00:49:48
Speaker
But it also means that I feel like I can't feel any other emotion other than grateful because for a while there, I didn't even think that I was going to get them.
00:50:03
Speaker
And so every single time something's hard, I almost dismiss it and can't feel like I can't say it because I'm lucky to have them. I know that there are people in my Instagram following who haven't been able to have kids yet. And I feel really disgusted in myself when I am having a moment where I'm overwhelmed because I feel like I should know better.
00:50:33
Speaker
I also find it hard sometimes when I feel so much intense joy because I feel like I am cheating on the part of my heart that's with Mackenzie. So how can I smile when she's not here? But then the other part, then I talk to my myself, I can hear myself say, but she wants you to be happy. And I am just,
00:50:59
Speaker
I feel like I'm a ping pong ball just being batted across the table back and forth and back and forth. And my mind is the effect of the last seven years is that my mind is now so scattered and full and overwhelmed. And I've never felt more that feeling that you can feel two things at once because I'm both, it
00:51:29
Speaker
living the life that I dreamt of and struggling.
The Power of Friendship and Peer Support
00:51:36
Speaker
Yeah. I acknowledge that. And I think that that's sort of been another narrative that plays out for many, many women is that when we finally talk to our pregnancy after lost anxiety, Jen, how difficult that is. And it's hard because you've got to lean into any of the joy can be really difficult at that point. And then you hopefully finally end up with a baby in your arms. And I know myself personally, I've struggled with things like
00:52:00
Speaker
And she shared as well, you said, but sleep with a baby. And then I've put up with so much more because I was so grateful and I was meant to just be this loving, nurturing mother because I finally got this baby that I have dreamt about and wanted for so long.
00:52:15
Speaker
But yet then you're struggling with other things and it's really hard to articulate outwardly and not feel like you're not then portraying this immense gratitude that you do have. And those two things are so difficult. And I think what I hear there and what needs to be acknowledged is how profound and lasting these experiences are for one, if not trivializing it with the word experience or journeys or anything like that.
00:52:39
Speaker
how much this all stays with us for such a long time and I think that plays into as well what we want to unpack now is your two and the others as well but your beautiful friendship and how that come about and how you guys you see that but you don't need to always say it right and I think there's something beautiful so if we can kind of move to yeah how you met and how you had a whole space for each other and how special that it is I'd love to hear more about that.
00:53:04
Speaker
Do you remember age? Do you want me to take this? Can you go? So the hospital had told us about potential genetic conditions and genetic carrier testing through Mackenzie's mission, which was obviously a result of
00:53:23
Speaker
Rachel and Johnny's incredible work after Mackenzie's loss and I went online because I didn't know anyone in my life at the time going through anything like this and I found Rachel on Instagram and like many others I messaged her and I couldn't believe when she took the time to respond and the time with which I messaged her was kind of when we were in that
00:53:47
Speaker
waiting period between receiving the final MRI results and making the decision. And from memory, Rach was just really helpful in offering. I obviously then shared with her the results that we did receive and that we would be medically terminating Harper's pregnancy as well.
00:54:07
Speaker
And I feel like looking back now, I mean, Rach can talk to why she actually met me and had me back. But so much synchronicity in our friendship happened at the start and has evolved. And I'm just a firm believer that
00:54:25
Speaker
your whole life and journey is already written. Like you're just here basically as the puppet living it out. And I really believe, you know, people that you come into contact with and friends, et cetera, you're always destined for whatever purpose to connect. And I feel that very strongly with Rach because there was a huge moment during my labor with Harper where the maternal fetal medicine department at the Royal Hospital for Women have a bit of a tradition in that.
00:54:55
Speaker
a bottle of champagne or wine that was gifted from a previous family that experienced loss but went on to have hope or have their rainbow babies. So it was sort of this cycle of passing on a glimmer of hope through a bottle of something. And I was sitting
00:55:16
Speaker
laying in bed because you obviously need to be induced to give birth to a baby preterm. And one of the midwives from the maternal fetal medicine came in and sat next to me and she said, now I hope you don't find this strange but we have a bit of a tradition. And she pulled out this red box, this champagne box and she said,
00:55:40
Speaker
A family have brought this in that have also had a loss. We'd like to give it to you in the hope that it gives you hope that one day you'll bring one in for had finally made that trip into the hospital to give her own bottle to be passed on, which she received during her losses and
00:55:58
Speaker
I'm laying there sort of in labor and I sent her a photo of the box and she, I remember we were just like, Oh my God, like you got my champagne. Like I can't believe it. And so that, that was sort of really special. I felt like she was really there with me and I now look back and I'm like, Rachel is one of half as many.
00:56:15
Speaker
special gifts to me and that was just the start of that. And I remember, I think it was probably about a week after she was born, Rach and I lived quite close to each other at the time and Rach said, do you want to come over? We'll have coffee.
00:56:30
Speaker
And I mean, I don't know how many people Rach did that with at the time. I don't think she had time. She just had Zach to be going for coffee with everyone that wrote her on Instagram. But I'm so grateful that, you know, she took that in how we view friendships, boundaries, work, family. I like to say, I think we're quite headstrong women that
00:56:55
Speaker
give out everything to people that we love, but also will not tolerate crap. And yeah, what's evolved from there are just for more synchronicities. So when Rach shared that she fell pregnant with Joshi, naturally her little miracle, who she had to wait to have testing done to see if he was healthy, I fell pregnant just weeks before her with River.
00:57:25
Speaker
And unfortunately for us with Harper, they weren't able to identify the genetic cause of her disorder. So we couldn't do IVF or any of the testing that Rach has shared in to see if it had developed normally or if it looked like Harper's and the same thing had happened again. And so Rach and I pretty much spent the first three months of our pregnancies waiting in this horrendous anxiety to find out if we could keep them or if they would be healthy. And I don't know anyone
00:57:55
Speaker
that has kind of navigated that at exactly the same time, like what are the chances we both have these genetically complex conception journeys, fell pregnant naturally at the same time, and held each other through that I think in ways that no one else could really do or understand unless you were going through it.
00:58:12
Speaker
And so now we have our babies that are just a few weeks apart that both turned out to be untouched by these genetic disorders and healthy and seeing them play together is just so surreal for us. So yeah, it's been really, really special and I think
00:58:32
Speaker
I think for me, what's really special about our friendship is we, there's no competing around who's had a worse journey or whose pain is greater, whose grief is stronger. Like there's no room for that in genuine compassion and empathy. And while we've got similarities in our journey in that, you know, we're the only ones in our group that ever know what it's like to have to leave us without your baby.
00:59:09
Speaker
that's a similarity, but there's differences. I add to birth Harper, which as Rachel said something that she really never wanted to have to do with her terminated empathy and emotion for what she went through with Mackenzie that I couldn't feel before River. And I've told Rachel sometimes I just go to bed and I cry thinking about what she went through. And I think it's just that
00:59:28
Speaker
something we still can't watch.
00:59:36
Speaker
felt like support and love that we show each other. Yeah, it's never a competition. It's how can I show up for you today and are you okay? Years on and I'll never get tired of it. How can I show up for you today? I think that is such a beautiful
00:59:57
Speaker
I've followed for a while and I've loved watching your friendship and how you do show up for each other. I'm sure I only see a tiny part of it on socials. I don't see the full of what you all have for each other, but I think that's such a beautiful question that everyone can ask themselves.
Improving Support Systems for Bereaved Parents
01:00:13
Speaker
If you're listening and you have friends, loved ones going through this experience, how can I show up for them today? I just think that's just something. Yeah, it's absolutely beautiful.
01:00:23
Speaker
Thank you. Especially if you don't know, because sometimes you don't know. And you know, people don't know how to support others through loss. So ask. Sometimes when you're going through the loss, you don't know either. Like everyone's like, what can I do? I'm like, I don't know. I don't know what I need. I don't know what my name is today. Rachel, did you want to add anything to that?
01:00:53
Speaker
When I first lost Mackenzie, I could only see darkness. I couldn't see. I was so angry. I was so angry.
01:01:09
Speaker
And that anger and sadness just seeped into every part of me. I questioned everything about life, you know, religion, spirituality, everything. And it's only sort of as things progressed, was I able to see the abundance of gifts that Mackenzie actually gave me.
01:01:39
Speaker
And I'm actually preparing tomorrow and recording some videos for palliative care. And one of the things that I'm sort of saying to these parents is you will find gifts, but it's so hard to hear it in the moment.
01:02:03
Speaker
And my world is completely different because of Mackenzie in every way. My, who I am, how I deal with people, how much I give, how much I won't put up with, but also the people in my life. Like I don't, I lost relationships, really significant relationships.
01:02:28
Speaker
But what I've gained in this group of girls is, yeah, like Jade said, it's so hard to comprehend that you're so thankful for something that you had that was caused because of the loss of your child. But there's some incredible people in my life that stood by us.
01:02:54
Speaker
but they have never really been able to give or understand the way that people like Jade can. Not 100%.
01:03:09
Speaker
I'm still blown away by all of this. It takes a lot to listen and to hold space as well and to think about all of these different things and how they've impacted you. But I do hope that everyone is listening. There is an element of hope here and there is that element of the reach now to make new friends is okay.
01:03:29
Speaker
the power of peer support, the power of connecting with someone else with Lyft experience of this, and that is something that also Pink Elephant tries its hardest to provide. That's how it started. Gabby, for me, was what you two have. It was that someone who just got it had a completely different experience to me, and it was that that we wanted to create and make sure that everyone has access to.
01:03:49
Speaker
We're here today and the miscarriage rebellion is around action, specifically for pregnancy loss. We know that we've talked about this, that it's not moving quick enough, that women are still being dismissed by their experiences with comments like, at least it happened early, or at least you have a child, or a lot of those invalidating comments happen, and then that flows through into the experience being met with the lack of empathy and understanding that it really, truly deserves.
01:04:17
Speaker
You both felt so beautifully about those first losses that you had as well at the beginnings of both of your journeys. But I want to kind of put it back to both of you now and go, if there is no magic wonder, we know we can't make the experience not happen to us. But if we could change one thing within the system, if there's some action that you would like to see that could make it easier for very parents, then what would that be? What would you like to see happen?
01:04:45
Speaker
And I might go to Jade first, if that's correct. Honest, mine's quite vague, but in a nutshell, if I had a magic wand that could change one thing, it would be that everyone had an abundance of support post-loss, and we're not on the receiving end of really insensitive, horrible comments. It's that we treated grief.
01:05:06
Speaker
like we do with parents that pass grandparents, anyone else, we treat baby loss in the same way that people will not have to suffer secondary losses in their life when they're already in so much pain, secondary losses of relationships, friendships, social safety, or all of it. It's that we can wrap them in wool and love them and they don't get hurt more than they already are.
01:05:35
Speaker
It's true. I don't think it's vague. I think it's really clear. I think it's really, really necessary. Rachel. I'm going to be greedy and I'm going to pick two. And they're pretty big, but firstly, I would really love it if somewhere in our education system, we were all taught grief.
01:06:05
Speaker
Because we are all going to die. We are all going to have family members that die. And as a society, we are so absolutely terrified of loss and of death that we don't confront it until it actually impacts us.
01:06:24
Speaker
And we all feel so uncomfortable by grief and by loss that those comments of at least they're used not to make the person feel better, they're to make the person who's saying that statement feel better because they're uncomfortable in the situation and they want to make themselves feel better that you will be fine.
01:06:48
Speaker
And so I wish that we had taught grief and loss in the education system and what to do, how you can help, because the people who hurt me the most were the ones who
01:07:07
Speaker
didn't want to hold space for me because it was uncomfortable for them. So they needed to walk away. And I felt like I had to spend my time where I should have only been having to think about my daughter and my family.
01:07:22
Speaker
having to grieve relationships that were around me because they hurt me and they had walked away. And I was so angry that my attention was being split. And the second one would be what you guys are doing, but
01:07:43
Speaker
You know, what I'm sure you hope for in the future is this centralized spot that when you lose a baby in whatever capacity,
01:07:57
Speaker
You have this one organization that gives you free counseling that the government provides. You're set up with a counselor. You don't have to try to find one like I had to try to find. When I had my daughter diagnosed, I had to find someone. I didn't know about mental health care plans.
01:08:18
Speaker
I didn't know the list of things that I could give to my family members or to my friends and say these are the things that are going to help me over the next six months. Like food delivery, someone to come and do the wash dry fold laundry services. There's a list of things that I wish that I had known and I would love to see a one-stop shop basically for people when it comes to child loss.
01:08:45
Speaker
so they don't have to try to find it themselves. And I'd really love the government to be able to see how much of a priority that should be.
01:08:53
Speaker
I couldn't agree more as a CEO of an organization that doesn't receive any ongoing government funds to provide the circle of support that holds space for thousands of brief parents each month and does not have enough capacity to provide counseling services to each and every one of those that wants it. So for example, we'll run a bereavement support program. We'll have 85 women put their hand up and say, I need this. I want this. And we can only put 12 through.
01:09:21
Speaker
It's not good enough. And it's not good enough. And we can't change this alone. We can't make this happen. And I get upset because it hurts because I see us saying no to people who are brave enough to admit that they want support and help and need it. And we can't do this alone. And it needs to start with an understanding of the profound impact of these losses and the lack of support that there is. Like when I started Pink Elephant eight years ago,
01:09:49
Speaker
There was nothing for specific to pregnancy loss that was early prides twenty weeks again i hate the word early as well. There was nothing in that space we were just starting to maybe share something on social so i feel like part of this is why i completely crazy let's.
01:10:04
Speaker
raise the awareness, but let's raise the awareness. So it's a call to action. That's really clear that we say, Hey, government, you have a role to play in this too. You need to listen to us and you need to understand the depths of our experiences, our grief, everything that comes along with this. And you need to help us. You need to actually put more than two lines in a national women's health strategy on miscarriage, because it's not good enough. I think, um, knowing from everything with Mackenzie's mission,
01:10:32
Speaker
I think it's really important for the government to actually hear that it's not just sad women, parents in voter commas, that there is actually a significant impact on Australia and if they could actually see the long-term implications
01:10:52
Speaker
on them, on governments, on money, on workplaces, that it is actually more beneficial to put money towards this than to fix it once people are broken. And it's that. We know from research in the UK that if women are left unsupported after an ectopic pregnancy, any other type of pregnancy loss, there's clinical levels of anxiety, post-traumatic stress disorder, and even suicidal thoughts that are still present one to three years later.
01:11:22
Speaker
We can do better. We can provide early intervention care support. We can provide counseling services, therapy support programs. And when we do that, to your point, we can increase things like a woman's workforce participation. We can make sure that a woman is ready to go back to work and her partner too. And they've had the support and that wrapped in that love and cotton wool that you described, Jade. It matters. We know Professor Leslie Wiegand from the UK, who's a highly respected urban guy and would be equivalent of being on Rand's Gog here.
01:11:50
Speaker
Profat, like, shows her research around how TLC is a thing that makes the most difference. Tender loving care is a thing that makes the most difference in a pregnancy after loss outcome. And that's someone who's got a really scientific mind who's saying, this makes a difference. We need to wake up. We need to offer this to parents when they need it most. So yeah.
01:12:10
Speaker
I could go on, but I'm doing amazing work, Sam. But yeah, the fire in your voice is what's going to create change. And, you know, I think you're right. We're moving too slowly. We have a really long way to go. I think it's a vicious cycle in that we need more women to speak up about their experiences. But society doesn't hold a safe space yet to do that. So, you know, it's chicken or the egg first. Like, where do we start? And
01:12:37
Speaker
I always encourage people to share their experience if they feel comfortable, but I really absolutely understand that some women are just not in a place to do that because they've either been met with a real lack of empathy or really insensitive comments or, you know, the workplace treating them really terribly or lack of support. So, yeah, I really commend the brave work of women who are coming forward every day and sharing their experience. But yeah, like Rach said, I think the way
01:13:07
Speaker
to the government is through social and financial implications on society, not through a woman crying. Unfortunately, it's not the way to them.
Community and Professional Support Services
01:13:22
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.
01:13:35
Speaker
unable to access the support that they need and deserve, simply because they don't even know that there is support available. 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.
01:14:03
Speaker
Some have lost babies at five weeks. Some had ectopic pregnancies. 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.
01:14:27
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
01:14:59
Speaker
We acknowledge that some topics discussed on today's episode may be triggering or distressing. So we have brought on the CEO of Red Nose Australia, Karen Ludsky, to share about the support that Red Nose provides to families who need to be supported through later term losses and infant and child deaths. Welcome, Karen.
01:15:23
Speaker
Hi, Karen. It would be really great if you could share more with our listeners around what Red Nose offers in terms of support for bereaved parents and maybe even family and friends of bereaved parents as well. So Red Nose offers free bereavement support to anyone impacted by the death of a baby or child and that's from miscarriage all the way through.
01:15:47
Speaker
to the death of an older child. So that covers everything from miscarriage to termination for medical reasons, stillbirth, neonatal death, SIDS and any other infant or child, death that has been sudden and unexpected. We run a range of programs. So what underpins, I guess, everything that we do is
01:16:12
Speaker
a 24-7 bereavement support line that anybody can ring any day at any time and have that call answered by someone with lived experience who will be able to hold that space for them and then make sure that they're given access to the next stage of support if they need it. Sometimes parents or family members or friends I should say, having someone on the other end of the phone
01:16:41
Speaker
when they need it is enough and it will tide them over until they need it again. Coming out from that peer support line is a really broad range of online and face-to-face groups that again cover all aspects of
01:16:59
Speaker
of loss from miscarriage all the way through to older children. Some of those groups are loss specific and some of them are more generally grief related. There's also grandparents groups, there's men's groups and we know that it is so much more than the immediate parents who are impacted by the death of a baby and sometimes that extra support is needed for our support people to be able to support
01:17:28
Speaker
their loved ones. We also offer face-to-face online and phone counselling. So that is a more clinical support avenue that helps people start that integration of green.
01:17:45
Speaker
and helping them, I guess, commence that new life that was very unexpected. We also have our hospital to home program and that program is a relatively new program.
01:18:01
Speaker
It is delivered by staff who have all had lived experience and it really focuses on that transition from hospital back into life with that baby. It is a six session support model, very much focused on helping that integration so it's more of a psychosocial support. If families then need more, they are then referred back into the
01:18:30
Speaker
broader support services or to other organisations if that's relevant.
Episode Reflection: Resilience and the Importance of Support
01:18:36
Speaker
Wow, what an episode. I am so grateful that the girls were so generous in their sharing today. I think I just wanted to acknowledge just the severity of their experiences and really what we have heard today on this episode is a deep sense of trauma that they've both gone through. I think whether it is pregnancy loss, whether it is a stillbirth, whether it is infertility that we're discussing here,
01:19:05
Speaker
We need to start really taking it as seriously as we would with other illnesses, you know, other mental health conditions. There is research that shows women dealing with infertility have depression, anxiety levels, just the same as those with cancer, HIV, heart disease. And so when we are holding space for these stories, you know, it's not necessary that we have to add an added depth or darkness, but I think we just really need to start taking these seriously.
01:19:31
Speaker
in the impact that they have in our lives and hearing that story really just made me want to solidify that and if you do have anything that's come up from the episode, anything even remotely similar and you feel like you've been unattended to, you feel like mentally you still haven't got the support you needed and I really just want to acknowledge and encourage you to take your mental health super seriously when it comes to even just listening to that episode or whatever is going on in your own life.
01:20:00
Speaker
Yeah, absolutely. Really important. I also want to kind of build on that and acknowledge the resilience that I heard. Then we acknowledge in many of the experiences of women who have journeys of multiple losses.
01:20:16
Speaker
or years of fertility challenges and what it takes to keep picking yourself back up again and going again and I thought that Jade really put that beautifully when she talked about asking herself whether her desire to have a living child in her arms to parent
01:20:32
Speaker
was more than her fear to go through another pregnancy again. I feel like those who haven't gone through these journeys, that's just something that you don't understand unless you've lived that. That resilience to put yourself, to be willing to try and conceive again, to possibly be pregnant again, not knowing the outcome and where you're going to land.
01:20:53
Speaker
And I feel like Jade and Rachel exemplify that resilience so much with all of their stories and the way that they kept going. But I also, like I said, want to contextualize that with that need or support because you can be that resilient and keep going through that. And both of them talk about accessing therapy and support.
01:21:12
Speaker
And then why we brought them on was they talked about how it was a beautiful connection that they supported each other through different parts of these experiences and how that connection has helped them to move forward in whole space for each other. And again, that comes back to the heart of Pink elephants as well, right? That lived experience.
01:21:30
Speaker
power of peer support, those meaningful connections which come from a place of understanding and empathy rather than trying to fix us and move us forward, those people that will sit with us in our time of need and darkness. So I hope that what people hear from this as well is not just the resilience and the strength and how hard these experiences really truly are.
01:21:52
Speaker
but also a little message of hope that it is okay to connect and to reach out to others who can offer you support and hopefully can sit with you while you're going through these experiences. Absolutely. Thank you so much for listening.
01:22:06
Speaker
If this episode has brought up a desire to find out more information, some of the research that I've quoted will put in the show notes and all the support that you may need. You are not alone. We're here to support you in any possible way we can and the resources and support links will be in the show notes as always. Thanks so much for listening.
01:22:27
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. If you enjoyed listening to the miscarriage rebellion, please help us by leaving a five star review wherever you listen to podcasts.
01:22:57
Speaker
The Miscarriage Rebellion is a Pink Elephants podcast, produced by our friends at 3P Studio.