Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
S2 E13: From Patient to Advocate: Samantha's Path to Holding Space for Pregnancy Loss
0 Playsin 12 days
In another deeply moving episode, your host welcomes Samantha, a beloved Peer Support Coordinator for The Pink Elephants Support Network, who shares her extensive and intensely personal journey through loss. Samantha opens up about her five-year path with IVF, multiple miscarriages, and the heartbreaking decision to undergo a termination for medical reasons (TFMR) at 18 weeks after her waters broke prematurely.
Samantha vulnerably discusses the immense emotional toll, including the feeling of being in shock and the profound emptiness that followed. She shares the pivotal moment she decided to seek the purpose within her experience, recognizing that accepting her grief was the only thing connecting her to her lost babies.
This conversation is an essential exploration of:
- The critical role of support and therapy in navigating the acute stages of grief.
- The devastating reality of the medical system's language, such as "pregnancy tissue," and the emotional desensitization that can occur after prolonged fertility treatment.
- The societal discomfort with baby loss and why the grief from miscarriage and stillbirth is often invisible and isolating.
- Samantha's experience grappling with the difficult concept of "choice" during a TFMR and the need to prioritize the baby's quality of life.
- The misconception that moving on means forgetting, and how the dual process model of grief allows for restorative movement while still honoring the connection to the baby.
Samantha's story is one of profound pain, survival, and ultimately, finding a way to transform her experience into a source of support for the community.
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 through Live Chat with Peer Support
- Join Online Communities
- Call out Pregnancy Loss helpline delivered by PANDA
- Join the Circle of support
- Follow @pinkelephantssupport on instagram.
STACEY JUNE LEWIS
You can follow our host Stacey on her personal Instagram account where she shares some of her lived experience.
Recommended
Transcript
Introduction to the Miscarriage Rebellion Podcast
00:00:04
Speaker
Welcome to the miscarriage rebellion. I am Stacey June Lewis, lead of the Pink Elephant Support Network group counseling program, Grief and Grace. And along with Pink Elephant's co-founder and CEO, Sam Payne, through this podcast, we will share the 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 lack of support that they may face. This is a loss that has been silenced for far too long and we deserve better.
Samantha's Personal Journey and Insights
00:00:32
Speaker
We are here to normalize the conversation and to make lasting change.
00:00:37
Speaker
Welcome back to another episode of the miscarriage rebellion. I'm so thrilled to be joined by one of our own today. Samantha joins us as a peer support coordinator, but just as importantly, she comes to that role with very in depth lived experience. Welcome, Samantha. We're so, so happy to have you on the show.
00:00:55
Speaker
What a privilege. I'm so happy to be here. Thanks. Oh, that's so nice. And it's such a big journey to get to the word privilege. I mean, like I know that you and I could relate to being in the trenches of this experience and the word privilege and, um you know, seeing any form of light at the end of the tunnel can be something quite challenging for somebody listening that's right in the edge of it. But it is so nice to share that with you in those elements that you feel like have become an honour and become become something, i wouldn't say the word positive, but you have made such an impact from the things that you have experienced. So let's just start there a little bit. You know, what was the turning point for you And we'll get into your lived experience, but what was the turning point for you where you decided you wanted to find the jewel in it or you wanted to find something, you know, some impact from what you had gone through?
00:01:48
Speaker
i I guess my first thing is a lot support and foremost. lot of support first and foremost I think about like the amount of psychological sessions, the counseling sessions. It took me some time to actually accept that grief wasn't necessarily a negative thing. It was probably the only thing that connected me to my beautiful babies that I lost. And the moments that I started accepting grief, I started realizing that there's such positivity or this this potential purpose behind what happened. And maybe I'm phrasing it wrong. It's not necessarily purpose behind what we've done. It's more like,
00:02:23
Speaker
i I need to find purpose about what happened. I can't just sit here and accept that I've lost babies and it you know obviously changed my life. So let's find a silver lining behind this and let's actually help people that have gone through this process and make their lives a little bit easier because it wasn't so easy for me and if I had the support that and i'm I'm hoping that I provide other people, I'm sure I would have been better off, you know, on the longer term or the short term probably. Yeah, and I think both of you, both of us, I should say, are getting a little wordy around the terms like, um you know, positivity and, you know, the gifts of it because it it is one of those things that I'm sure I know in the absolute depths of it, that is so far from where you could possibly imagine yourself. So I think the reason that we kind of dance around that a little bit is to try and really honour and be sensitive to the fact that that is not expected of people and it's not necessarily what it looks like. But also I think it is important, and we've we've covered this in season two, that that hope and these elements of coming out of that time are possible and and they do happen. So when you, and i think I thank you so much for sharing that that comes from support. As a therapist, it's very nice for people to admit that they're actually in therapy. um There's many times I see people up the street that are looking the other way, pretending that I don't exist and it's not about me, but it's more about the process, you know, in that
00:03:45
Speaker
these things do actually support, you know, they do move you from one, well, we hope they move you from one place to the next. But let us then turn back to where this journey started for you. um We've kind of jumped to the end. Can you tell us a little bit about where this began.
00:04:02
Speaker
Yeah, of course. And I hopefully don't bore people with my story because it was a bit of a long story and it does um end in a happy story, which I know not many people have the opportunity to be able to talk
Five-Year IVF Journey and Losses
00:04:13
Speaker
about either. So I want to really acknowledge that I'm one of the fortunate ones that actually have a beautiful rainbow rainbow baby at the end. But I can imagine there's quite a few listeners that are probably hopeful that they'll get their rainbow baby in the future. But I went through about a five-year journey with IVF, lots of disappointment through that process. And, of course, I'm on this podcast because I had many losses as well.
00:04:36
Speaker
um So my first loss was probably... the worst that probably could have ever happened was a termination because of medical reasons. um And then my second one was in relation to um just a mis miscarriage. And when I think back to that experience, I mean,
00:04:56
Speaker
It was like firstly not like not being able to fall pregnant and then having to go through fertility treatments and understanding that process because it's a completely, it's no one really explains to you how that process actually works. You kind of just live it and hope for the best.
00:05:10
Speaker
And then when we were finally pregnant, I thought, oh, well, that's done. Fertility specialist done. I moved on to the OB. Now I can actually live our lives and not have to worry about these medical things that I had to deal with, with all the injections and all that wonderful stuff that you do when you're in IVF. yeah And then, um,
00:05:26
Speaker
And don't get me wrong, I was relatively anxious because like any first time mum they're just really worried about what could potentially happen. And then 18 weeks um hit and I woke up and I my i thought my water broke, which i was shocked. i I didn't understand how that would be. i remember going to the bathroom and i was just like, this this pee does not feel like a normal bathroom visit.
00:05:53
Speaker
It just kept going and going and going. And I just thought like, I just remember a close friend of mine describing when she, her water broke and it just kind of gave me this flash of like, oh, what's just happened.
00:06:04
Speaker
And I remember calling the hospital and, you know, obviously the hospital did their due diligence and thought they were giving me the best advice possible. um But when I called them, the nurse on the other line mentioned like, that's impossible. Like you cannot have your water break at this stage. You might be just a bit incontinent. So how about you just pop on a pad, see how you go and call us back in the next couple of hours. And I, you know, I think the hardest part about this whole process is that you as a mum, kind of blame yourself about the things that you did at that stage you know i really wish that I advocated for myself and say I'm very sure that my water broke but I'm a little bit of denial at this stage kind of sitting there going no maybe I'm just inconsident because I don't want anything bad to happen to my baby so I'm just going to follow what the the medical professionals have told me and I'm just going to pretend like it's not happening and then or just follow the advice really
00:06:57
Speaker
Right. So i remember calling them a couple of hours later being like, I'm just not sure. And they're like look, um keep going. See how you go. Like, you know, they they told me to do all these X and Y things to needed to do.
00:07:08
Speaker
and then I remember calling them the next day being like, I'm pretty sure that this is a water break because it just can't be like this water. just that I'm just constant. And I called my doctor and my doctor said, hey, um come in tomorrow. We'll do a scan and we'll figure out what's going on.
00:07:23
Speaker
And little did I know that that was going to be probably the worst week of my life. um I thought, and it's so funny because when you're in that situation, I just thought like, oh, the medical professionals will just fix everything. It's no problems. Everything's going to be okay.
00:07:37
Speaker
And then I remember um my doctor just told us to go get an ultrasound at the hospital, at the local hospital, just the hospital down the road. We got an ultrasound. I remember my husband was really anxious because the the sonographer comes back in and just says, I just need you to go back to your doctor. Your doctor's advised to go back. And I thought, oh, this is great. The doctor just wants to tell me that everything's okay and everything's going be fine. um And my husband was like, I don't think this is bad. Like, this is good news, honey. Like, I really need you to start preparing yourself that something might be bad. And of i was I was just in denial. I was like, no, my baby will not be leaving me. This is this is fine. this is going to be okay.
00:08:13
Speaker
And when the doctor, and you know, good on her for being so straight with us, she's like, this is my job to give you good news and bad news. And unfortunately I'm here deliver some really terrible news. And, um,
00:08:25
Speaker
I think to myself, I it was i didn't expect I was going to cry, but I just reclaimed back to that. i just remember the words that came out of her mouth and saying, you need to make a decision. um you know how about let's Firstly, let's admit you to the hospital, go home, get yourself a little overnight bag. You're probably going to hospital for a couple of days. So just prepare yourself for that. um We're going to put you straight on antibiotics because there could be some sort of infection that might risk your life and At this point, I was thinking it was to save the baby. So i was like, yeah, of course, we'll go. We'll go straight to the hospital, all that stuff. um And then at the hospital, they did another confirmation confirmation scan and they said, look, right now the prognosis is if your baby survives, they will be severely disabled. Quality of life is close to none. um So either you can just let yourself...
00:09:18
Speaker
um you know, wants to survive, you you have the choice to continue on the pregnancy, or you can go with the really tough decision of doing a ah termination because of the the severity of his sickness.
00:09:32
Speaker
And my husband and I had a very clear um goal when it came to our child. And it was quality ah quality of life is so important to us. So we were pretty level-headed when it came to the decision. Like we thought like, oh this is the right decision. We'll fall pregnant again. We'll be okay. And Yeah, I think in the hospital I was pretty, i was focused on the task. The next task is to survive this hospital visit.
00:09:59
Speaker
Anyway, so everybody was very much like, you're handling this very well. I'm very surprised. And I was like, you know, I understand what we need to do. And I wasn't, i don't know, I was still in denial that we're going to save this baby. I had no idea what was going on. And then...
Immediate Aftermath of Loss
00:10:11
Speaker
the The moment we were rushed into, like they did the process to get us started to um eventually labour and stuff. um It wasn't until I was pushing out this baby that I started realising this, and like I don't know if I can swear, but it was the shittest moment like I could possibly imagine in my life. And i I wouldn't wish it upon my worst enemy. This is just not fair and it's,
00:10:37
Speaker
I remember the midwife after we delivered said, I just want to say that really bad things happen to really good people. So don't think that this is your fault. You guys did nothing wrong. It's just really shit circumstance.
00:10:50
Speaker
And um she was the one that encouraged us to meet our baby because initially were like, we just don't want, we don't think we can emotionally handle it. And we had the opportunity to be hold be able to hold him and spend some time with him. And it was a beautiful little moment.
00:11:05
Speaker
And yeah, We went home and then the emptiness really started to flood in. It really felt empty. And the grief started to rush in to say, this actually just happened. Like not even a week ago, like it all happened. Saturday was when my water broke and then Thursday was when we delivered our little one. So it was horrific.
00:11:27
Speaker
I'm so sorry.
00:11:31
Speaker
I'm so sorry. And I think, you know, when you were saying you're kind of i think i can actually observe in you there's still a little bit of shock when you talk about the shock when you're saying i wasn't you know i wasn't thinking this or i was because you were literally in shock you know there's an element of your of it not being able to be comprehensible for a reason right it protects us that shock so we can kind of find ways to process the unfathomable And so when you say you went home and the emptiness began,
00:12:07
Speaker
from a peer support coordinator perspective now, looking back at that time, what do you observe about the supports or unfortunately the lack of that you were given to deal with what you had just gone through, which is losing your baby?
00:12:25
Speaker
Look, I think I was one of the fortunate ones because the hospital that I stayed at offered me ah three ah three psychology sessions with a perinatal psychologist for free. So the hospital was going to cover those sessions for me.
00:12:39
Speaker
And I don't think I would have taken, like, I don't think I would have done that on my own. And I'm thankful that they had to offer it to you rather than you ask for it. Yeah. Okay. it's a really good don't know I've not that I think I can handle it it's just I always have I think there's an inner pride that you can manage right like you don't need the support I should and also you're grieving like you you kind of as you've mentioned you you're not sure what day it is like you've come home like it's not necessary like we really do want to get to a point where systems are holding us not that we have to kind of advocate and navigate and fight for all the time like in a moment like that we know that when we lose elderly members or we're in you know you're at home people are bringing you food like you're not getting up like and requesting and project managing your support necessarily you know so yeah it's understandable and that is a really good point of kind of being presented to you as a different type of thing than actually having it just accessible to you if you want it oh and look it
00:13:37
Speaker
It was the best thing that that happened to me because it actually really started to allow me to accept. what Well, accept is not the right word, but it just made me confront the issue that was that I was experiencing. I was in denial. as much as I felt the emptiness, i wasn't accepting what was actually happening. I just who could accept what was happening. It's not fair.
00:14:00
Speaker
How could we go through all this process to fall pregnant and then be told, no, you can't have this anymore, even though you were trying really hard to make sure? and like the thing that really frustrated me throughout the whole process is You know, we kind of go through life being told if you try really hard and you follow the rules and you do the right thing, you'll get what you want.
00:14:21
Speaker
And like I followed the like pregnancy food journals. I made sure that I wasn't exposed to anything. Like I was following it to a T. So the moment I was told that I somehow got some sort of infection that could have promoted um like a premature rupture of membranes, I just didn't understand. Like I followed all the rules. I did everything. Why? Like how did this happen?
00:14:43
Speaker
but I'm digressing from your question. um From support point of view, i was relatively lucky and I think I probably wish I reached out for more support. um When family called me, I mean, i was devastated. I cried, but I really was trying to be quite stoic because I don't know, I think a lot of people, um you know, it depends on your personality, actually. It shouldn't say everybody's like this, but I come from a space I support other people. I like to help others and I i always put my own feelings on the back burner. So,
00:15:14
Speaker
I can imagine how awkward it would have been for someone to call me to say, I'm so sorry for your loss or whatever the conversation they were having with me. And for me, like to accept that, I just was like, no, this would be really hard for you too. Oh my God. I really want to slap myself when I think about what I was doing back then. But sometimes as well, Samantha, like you want to be yourself. You know, like people say, oh, my God, you need to receive, you know you have to do all of these things. And, yeah, sure, that's for a long a long planned journey of, you know, self-care and therapy. But in that acute time, i think a lot of women that, and um what I hear you're describing as well is,
00:15:50
Speaker
you're wanting to feel at least a little bit familiar with who you were before all of this as well. Like to kind of then all of a sudden start to be vulnerable and and move into a place where you're not familiar with is already then another thing you need to kind of navigate in an already kind of ah traumatic experience of unknowns and and lack of control and all of these elements. so I think often we can also, you know, these ideal scenarios about what we do and how we receive care can also be unuseful and really unhealthy for us to expect ourselves to be moving into these ideal versions, you know, because it's survival at this point, right?
00:16:28
Speaker
I think you're right. And equally, when you experience loss, I think everybody just assumes you're going to know what to say or do. Like when people say, just call me if you ever need anything. And you're just sitting there going like, I i don't know what I need. Like, I don't even know if I need to shower right now. i don't even don't i don't even know how I feel.
00:16:46
Speaker
So how do you expect me to pick up the phone and say, actually, it would be really great if you cleaned my house and make me feel little bit better because feel like me. Yeah. Especially if you're a person that's so capable and never, ever asks, and he's often the person doing that for someone else, then that's like a lobotomy.
00:17:02
Speaker
I agree. 100% agree. So I think that you know all of the like the doers, the ladies out there that are running their life like that, you know we've got to be careful that we don't be hard on ourselves, that then now we need to be shaming ourselves about not...
00:17:16
Speaker
asking to receive. Like we also are
Balancing Grief and Work
00:17:19
Speaker
grieving. There's a lot going on that I think is well then to ask you to completely change your personality is a pretty big ask in the face of what you've experienced. And so so in that time you gained support, there was some context and at least some kind of clarity that was starting to appear as devastating as I'm sure, you know, it it was.
00:17:42
Speaker
What was the process that you went through to I don't want to say move through that, but take steps out of the acute stage and into more of a restoration. Like when we say, well, we talk about this a bit on the podcast, but we speak a lot about it in our group therapy program that we use the dual processing model of grief. And so essentially restoration means you start to move into your everyday life. It doesn't mean you're not grieving, but you start to take steps. into what once appeared as more of an inverted commas normal kind of everyday life. Take us through what was going on for you as you were doing that. Were you keeping face but inside feeling something different or did you feel like there were steps that you took that helped you integrate the two, grief and real life? It's a really good question and I sometimes wonder how I actually ended up surviving because it it was such an immense amount of pain and I'm sure A lot of listeners completely empathise with that pain. But like, i think i was, again, fortunate to a degree. i want to be very clear to a degree that I had a relatively responsive workplace. So when I when i reached out to them to let them know what happened, um they were like, whatever flexible working we need to organise, like we will organise, but right now just don't think about it. So
00:19:03
Speaker
At that point, I kind of said to them, like, I don't know if I can be going to be ready for work. And they kind of made like, they explained to me the parental leave situation like I won't be able to be eligible for it because I was two weeks before it being considered a stillbirth and you can imagine the infuriation that I experienced from that but that's a separate conversation um but they were saying to me like you know these are your options this is what you can do and um i ended up returning back on a part-time basis for a couple of I think it was about a month and a half and
00:19:37
Speaker
It was hard. I'm not going to dismiss the fact that it was like, oh, and then I got back in and everything was great again. no I had to do a lot of that, like you were saying, save face um and just kind of slowly get myself back into a normal routine. I really, really wanted to just not return back to life. I can't.
00:19:57
Speaker
tell you enough how much I just wanted to wallow and not go back to normal life because if I go back to normal life is that a sign of me forgetting my baby that I just lost it felt like it at the stage like at that time it really felt like if I move on but like his life meant nothing and um it still means something even though I've moved on right like I'm I guess moved on is not the right
Misconceptions of Grief and Invisible Loss
00:20:19
Speaker
word. I think acceptance. I've accepted what's happened and it kills me, but I'm i'm okay.
00:20:24
Speaker
Yeah, it's one of the biggest misconceptions around grief in that if we move or we do that, we've stopped. And I think that's why we use the particular model of like grief theory that we do in our group therapy sessions and in the organization because it's so unique to this experience. because a lot of the loss and grief can be very invisible in that you might have been showing, but you nobody really met your baby. There isn't this kind of connected grief in that people are grieving for you or on your behalf, but they didn't necessarily have their own relationship with this with this little bubba.
00:21:02
Speaker
so you know, when we move through life, then it it it not only can feel like that, because as you say, you're doing and you're putting your steps forward. But when you move through life, no one else is remembering because no one met him, you know. So I think there is this really unfortunate idea around the movement of a person in grief to suggest that it means that it's stopped.
00:21:28
Speaker
Because I feel like, no, and i think that's probably the hardest thing for many women and many people grieving that go through this that have to realistically even pay the bills or, you know, move through whatever they need to do, potentially even for some looking after other children. Like it's, yeah, the movement and the process and as we call it, the restorative version of grief is a form of grief. And as a society, we just don't have that education, unfortunately.
00:21:56
Speaker
i I, I think when I, I've become quite obsessive with this, this concept of like grief and why is it so different to, you know, normal grief that we experience when we see, you know, like, I don't want to go into something morbid, but I mean, death is around us all the time. So why is it so hard for people to support people that go through, you know, miscarriage or any of the sort that we, you know, we've all experienced here on, on the podcast, but, um, and I've, I've did this research and it,
00:22:26
Speaker
It's funny because the grief itself, and it's kind of given me some, some comfort in some strange way. I think it's going to take some time for maybe some people or some listeners to really understand the comfort that I find from this study.
00:22:38
Speaker
But the grief is my connection to my son without the grief. Is he ah like, he he isn't here, if that makes sense. So what did he stand for? I think like the grief in itself reminds me that he was alive and he was so special to me.
00:22:56
Speaker
i wouldn't be grieving for something that meant nothing, right? Like he he lived and only experienced love and he experienced so much love, like between me my husband. We were very lucky to have him in our lives for 18 short weeks. we We got to live, like he lived for 18 weeks and I wish he could be longer. oh Oh, God, I wish I could be longer. i i would trade everything that I have for it to be longer. But he lived and he he's there. And think the other hard part about it is i felt like a parent after losing
00:23:32
Speaker
my son, I really did feel like a parent, but there was no acknowledgement that I was a parent. um You know, there was a lot of comments like, oh, don't worry, you're still young, like you'll have a babysitter, like you'll just fall pregnant again, diminishing the fact that it was really hard to fall pregnant in the first place.
00:23:46
Speaker
Or like, well, you got pregnant the first time, so you'll just fall pregnant again. and it's just, sometimes I think a lot of people just don't know what to say when it comes to this sort of grief. um they try and make light of it or make it like make it less uncomfortable by making comments that try and make things feel a bit better. and i don't know whether they reflect back on it and say, oh, I shouldn't have maybe said that.
00:24:09
Speaker
But I don't know, there's this in innateness in everybody that they want to say something to make people feel better when really silence and a hug and say, I'm really here for you. And I'm sorry is all you need to hear.
00:24:21
Speaker
It's true. And I think as your to your point, there is a very big discomfort with death as a society. And then you add death with babies and then you add death that people can't see. There are all of these challenges in front of us, which is why you sharing your story and us doing this work is important because these things are happening.
00:24:42
Speaker
They happened to you and they're happening to many. So off the back of the fertility journey, and then experiencing this and what some people kind of understand termination for medical reasons to be, there is, I guess, a very difficult conversation around the word.
Medical Termination and Quality of Life Decisions
00:25:03
Speaker
And this isn't a word that I'm choosing. I'm just putting the word into the conversation for you to speak to it. But the word choice is often kind of put into this conversation.
00:25:15
Speaker
So you've just gone through years of not being able to fall pregnant. And then apparently in adverted commas, you have a choice to make when it comes to your baby. And you did mention quality of life, but it is an interesting term. um And I wanted to ask how you've grappled with that word and how that may have started or changed for you over the years.
00:25:39
Speaker
a really good question and i think I think it varies between individuals but, I mean, you've asked me so I can definitely give my opinion. I think firstly, like like what you're insinuating, I felt like I didn't have a choice. I felt like especially when we'll like when we met with the sonographer to provide us the final report about what the the prognosis was for our son, he explained to us the likelihood of it happening was like a shark attack. Like it's very, very, very small amount of chance of it ever happening. um But we were the very, um like I don't want to say lucky ones, but we were like the very, very unlucky that received those that at particular prognosis. and um And he said to us, like, you can see whether the pregnancy continues, but to be very frank, it's, think he said a 20% chance of survival. And with that 20% chance, the quality of life is,
00:26:37
Speaker
minimal and I don't know he said it was more likely that he would pass and it wouldn't be a very pleasant experience for him because eventually like the the he would be severely disabled because obviously there would be no room in the womb and his limbs will start to kind of curl and stuff so he would just sort of be crushed by my body um so I personally thought i didn't I really didn't feel like i had a choice um so I you know It sounds like torture, doesn't it, when you put it like that?
00:27:10
Speaker
for Yeah. And I mean, like I said um previously, like I can't believe how rational I was throughout that experience. Mind you, I cried the whole time. There's no denying that I wasn't sad. But the rationality of like, no, this is this decision that we're making of like terminating because of medical reasons is the right decision, even though we kind of predicted like this would have been the scenario, but in three weeks' time, but more horrific because we have to rush to the hospital, like this way. and I don't know whether other people can...
00:27:41
Speaker
um aligned to this, but like I am a relatively a bit of a control freak. Like I need to be able to manage what's happening. And I thought this is the best way for us to be able to manage this situation where we're safe in a hospital. We've got our OB observing me every day and making sure that I was safe because I think I forgot that there was a risk of my life at that point as well. Like my focus was on my son. My husband was really scared about my life, to be honest. He was really scared that the infection might become something much worse and I might have something really terrible where we I might have a very terrible quality of life, if that makes sense.
00:28:21
Speaker
I'm so sorry you had to go through that. No one should have to do that. And it is one of those elements that can be ah very much of a compound grief because of the fertility. Can you speak to that at all?
Fertility Challenges and Medical Interactions
00:28:35
Speaker
Goodness. I think um that's a really good point um because by that point, once we got pregnant, I was very um desensitized to the medical system. Like I was very used to being prodded and poked and told medical terms and I really want to, ah you know, send a lot of love to the poor people that have no experience in the medical world before having to experience this because you just don't, like the the insensitivity in the conversations that you have with medical perfect practitioners can sometimes be heartbreaking. you know
00:29:08
Speaker
concepts like pregnancy tissue, like no acknowledgement that that's your baby is honestly heartbreaking. And I don't want to say that, you know, we were fortunate because we went through fertility experience and like we've gotten used language. we should No one should be experiencing that.
00:29:22
Speaker
But I think at that stage, going through as many as we did, we were relatively desensitized to the language. So the words weren't as sharp as what it could have been if you were just experiencing this off the back of just having a normal pregnancy, conceiving naturally, and then getting told all these medical jargon terms that you just don't understand. You kind of want to tell people to stop talking. i don't understand what's happening right now. um But you just get that, you know, constant talking and because they've got to rush off to the next patient, you just don't know what's going on. But back to your question about fertility journey, like I think
00:29:58
Speaker
I honestly thought, I mean, we fell pregnant the second round of IVF. So I thought, look, that's not terrible. It's it's not great. you would have been great for the first time, but we fell pregnant the second time round.
00:30:09
Speaker
Like we should be able to fall pregnant again. We've got some, oh, actually at that point we had none on on um frozen. So we'd have to go through a fresh transfer again. um i had a terrible, um we weren't being being able to make embryos at that point. So like we had to go through a lot of investigation after this pregnancy. Um,
00:30:28
Speaker
But in the end, I was like, well, I felt pregnant. And I trusted what the doctors kept saying. Like, if you felt pregnant this time, you should feel pregnant again. And I think that was a bit of a um a thing that kept my my mind focused. Like, I want to get pregnant. So I'm just going to keep going down this track. um And I'm very task focused. So a little bit of the emotions pushed back. So I was really glad that I was supported by psychologist to remind me these emotions will catch up on me and I need to...
00:30:54
Speaker
acknowledge them at the very least and then start processing them when I'm ready. So going through IVF and stuff like that, my process was, okay, now that I've gone through this terrible experience, let's, let's go and do this. Let's, once my body's healed, let's move into it. And i remember just calling my fertility specialist being like, when can I do this? Like, when's the fastest I can do it And he's like, you should take some time for your body to recover. And was like, no, no, no, my body's recovered. Let's just do this. And he's like, I'm going let's do four months. Let's, let's wait four months.
00:31:23
Speaker
And Then I went through, like I had a two-month protocol, so they would go through that process. So it was six months post my previous, pregnant um before the loss, sorry. And then I remember I felt pregnant and I was in denial. i was like how did that happen? Oh, my God, I'm pregnant. That's amazing. And remember someone at work also was pregnant as well. So we're like, oh, my God, we might have the same due date. How exciting.
00:31:46
Speaker
um And she went through IVF as well and we were very excited. And I remember going to that appointment and we actually had the appointment on the same day to check the heartbeat and she went and she's like, beautiful heartbeat. We took a recording of my husband's face. Well, they saw the heartbeat. it was very exciting. Oh my God, you should do the same thing. and I remember telling my husband, take a video, take a video. And we had a video of us devastated because actually there heartbeat, um, which I've now deleted of course. Um, but it was horrific. It was horrific thinking like, okay,
00:32:17
Speaker
Okay, that was a, that what what happened? What? Sorry, ah you said I was pregnant though. So what happened? Sorry, this can't happen again. Like we we we had the miscarriage, now we're on to the next pregnancy, so this should be fine now.
00:32:31
Speaker
And then, um yeah, it was not until the eighth round where I successfully fell pregnant um and had my rainbow baby with a lot of anxiety, as you can imagine.
Pregnancy After Loss: A Rainbow Baby
00:32:43
Speaker
Oh, I can. And I know it. I know that anxiety. I can't, even if you have similar experiences, there's just nothing that takes you to that moment, especially when with fertility, I think, well, from my experience, you put so much hard work in and there's something in you that even if you don't want it there, it's like you deserve.
00:33:08
Speaker
And we all feel we deserve our babies. Like, of course, that's what we're doing. But when you then move into financial and kind of the depths of your body and your emotional, your relationship, everything, your social world goes upside down, the 9am blood test, there little ah you do all of this and then you find out you're pregnant and you it doesn't it's not it's not happening.
00:33:32
Speaker
After, i mean, the reoccurring loss has its own level and its own experience, but when you think about reoccurring loss in that way and and that moment, what was what was that moment, what was your mind, what like what was coming up other than this can't be, this can't be, like what were the depths, what was this kind of the secret thoughts that you had then? um I did a lot of exploration on my personal values at this point and I realised the reason why I just couldn't get over and I think like everybody wouldn't be able to get over this so I don't want to dismiss the fact that it's it's a problem that everybody would experience.
00:34:11
Speaker
But I had a core value. Their big thing, yeah. Of course, no, completely. But I had a core value of justice. um which I didn't realise I had.
00:34:22
Speaker
And I just thought, this isn't fair. This isn't fair. And you always refer it to the worst case scenario. Like, how can these crack people have like babies, like six or seven babies and they neglect them? And I want to give my baby everything and you're not letting me have a baby? What's going on? This is not fair. How could there be any sort of fairness in the world if I am working as hard as I am and I'm not getting a baby?
00:34:47
Speaker
And then you have like, and then you become quite resentful. I remember friends falling pregnant. i was like, how'd they get pregnant? Like they didn't even try. They just fell pregnant. That's not fair. Right.
00:34:58
Speaker
And so I can't say, like, I don't know. I I'm very lucky that my friends completely understood, but I was really resentful and upset all the time. And, um,
00:35:13
Speaker
Like I remember there was one time close friends of ours let us know and they did it. Like they didn't realize, i don't know what they were thinking to be very frank, but, um, they announced their pregnancy at a big group setting. And, um, I tried really hard to keep it together. and said, I'm so happy for you guys, gave him a big hug and said like, I'm so happy for you.
00:35:31
Speaker
And I remember running to the bathroom and having a bit of a cry, composing myself and then got back in. And she came over to me and said, oh, you didn't see the ultrasound photo. Let me show you the ultrasound photo. And I lost my banana. Like I never seen this behavior from me. I'm normally quite composed and I've got myself kind of figured out, but I remember I just lost my bananas. to the point that everybody in the the cohort, like everybody at the party didn't know I went through what I went through and they all found out because I lost my bananas, didn't I? um Yeah, so I just, um I don't even know what I was talking, like what was my point? Well, we were just talking about the reality, I guess. Like I was asking what were your secret thoughts when with everything coming up and you kind of came back to this
00:36:15
Speaker
this injustice really essentially being being the big thing that obviously then kind of started to fuel into that moment but then further on into your life I'm
Financial Considerations of IVF
00:36:23
Speaker
gathering. m And look like I think when you go through as many fertility rounds as you do like we went to eight and we like my husband and I had to have a very serious conversation about are we going to have a baby? Are we going have to look at different avenues or like what's our plan here? Because we can't keep, like like you said, there's a financial burden when it comes to IVF. It'd be really great if it could be supported more so from a government point of view, but it is whatever it is. Um,
00:36:53
Speaker
but it was chunking away from all our life savings. Like we were working really hard to be able to try and do this as much as we can until we had our baby. I remember us on the eighth round, like we paid for and we said, okay, this is the final round. I don't know whether we would have actually committed to that, but we kind of said, this is the final round.
00:37:11
Speaker
can't afford anything more. Like let's let's put everything into it and hope for the best. And we were fortunate, but I know many people and I've heard of very many stories where people like it just doesn't happen.
00:37:24
Speaker
um And, you know, they become childless, not by choice. And I remember i read a lot of blogs because I thought I'd be in that that space. And I thank my lucky stars that, ah ah you know, I managed to have a baby, but there is the reality that it may have not happened for us either. Like it's heartbreaking.
00:37:44
Speaker
It is heartbreaking. And I think when you talk about when you were saying earlier that you felt like as a person you do feel comfortable and I'm paraphrasing a little bit, but comfortable or at least more more yourself with a bit of control. And I, you know, I can't really imagine that, that lack of control around your life and what it then starts to have you questioned. because as you mentioned with the injustice, I know for many, it's like a religious or spiritual questioning. It's very um very existential and existential doesn't just have to mean life or death. It really does start to open up the way you look at things, relationships break down, you know so much can happen from this experience. So yeah, i am I'm thrilled to hear that you did meet your rainbow baby. However, can you tell us a little bit about them?
00:38:34
Speaker
Of course, he's absolutely precious. He is 21 months in the next couple of days. So he is ball of energy and I feel very fortunate to be his mum.
00:38:49
Speaker
And i I do acknowledge our little babies that we lost as well. I let him know about his little, his big brother. I should say little, he's a little big brother.
00:38:59
Speaker
um Actually, his favourite toy is his big brother's toy. It's a little comforter that someone gifted us just when we did the gender reveal. And so it's a very important toy, not only for him, but it's a very important toy for us as well. And he's just a happy baby. And um I don't think he'll ever understand what we went through and I don't ever want him to understand it because I never want him to see the grief and the sadness that we experienced. But I hope he feels the love and the absolute gratefulness that we have that he's in our lives because he has
00:39:38
Speaker
He's helped us so much.
Finding Purpose Through Support
00:39:42
Speaker
And so now with your time, you work as a peer support coordinator. How did that come about? It's interesting actually because um i I knew I wanted to do something in this space. After, you know, going back to work and realising felt like no purpose doing what I was doing at work um and like you said, there was a lot of ex-sidential, I can never pronounce that word. Hold on, I might re-say this whole thing. How do you say Ex-sidential. I'm not going to try and repeat it but you have that crisis, right, where you turn around and realise,
00:40:17
Speaker
um this is not what I'm supposed to be doing with my life. I'm not here to generate profits for an organization. i honestly thought I was doing work to help people. I work in like um organizational development and change management. So it's all about getting people on board about a change. But I was realizing I'm getting i'm doing this for an organization to make them make more profits and make people more compliant. What am I doing with my life? And I kind of reassessed and decided, okay, I'm going to do something more important. going actually do something that fulfills um a big gap in my life where I want to support people who went through what we went through. And um at that point, like, i I don't know what I was thinking because I know my psychologists were recommending, like, there's the Pink Elephants community, there's Bears of Hope, there's a lot of different groups that you can reach out to for support. And I just kept thinking, like, I've got my psychologist, I've got this. Like, I don't need any other support. um But I really wish I...
00:41:08
Speaker
I leverage the support because now that I'm in the support group and actually support other women, I'm like, oh, my God, I wish I had someone like this on the other end of the line. Me too. and Yeah, and I was working for Pink Elephants, like, you know, doing just advocacy work in media or, you know, I knew Sam very well personally and still she was like, I know i know you have a lot of support, I know you're on this, but I wish for pregnancy after loss I had of LinkedIn too. I think, yeah, I think that was me personally where i was like, yeah, sometimes we do know and we still don't, you know, and and's there's many reasons for that as well. But I think it is an interesting point because if you are listening and you haven't experienced some of the supports that are there, it is worth having a a go and pull out or don't, you know, take just leave it if it doesn't work for you. But I think from just, you know, Samantha and my experience,
00:42:02
Speaker
we both wish now working in it that we maybe had a found a way to kind of give it a crack because i think um that that peer support even in the group therapy which is different to what you offer i see the benefit of people hearing their story in someone else's uh and it's it's evidence-based like it's an intervention it's not just like a you know kind of oh how lovely women like to talk it it works It actually works. It's therapeutic. Yeah.
00:42:33
Speaker
yeah it it didn't you think to yourself like, oh, look, I'm just going message this person. And it's funny because like ah when I'm i'm actually chatting to women, they're like, where are you? Are you in a chat, like a call centre? I'm like, no, I'm on my lounge and I'm just watching some TV on the end and I'm just waiting for you to respond.
00:42:51
Speaker
I'm just talking to you. All my energy is on you and I'm happy to stay as long as you want. And um when they start to realise, oh, wait, there's an actual human and they've actually experienced what I've experienced, it's quite – There's a lot of, there's a lot of appreciation for it. And I think I do want to acknowledge that it it is like a big brave step to go, okay, I'm going to go on this live chat and give it a go. um But I really want to, you know, kind of challenge everybody who is listening. Like what, what's the harm in trying? It might not work for you. You might hate it. It might not be the right person who knows, but
00:43:26
Speaker
I mean, every person I've had the privilege to talk to um acknowledge how supportive it is to actually have someone on the other ah end of this live chat function to say, I get it and it sucks.
00:43:41
Speaker
Oh, I mean, totally. And I think I want to add to your very poignant note there. You do not have, like, I think we have this idea you know, someone before me or I'm doing okay. I've got a therapist. I've got ah a mom that's calling and bringing me food. Like there's people worse than me or I'm not anxious or I don't kind of never suffered from depression. All of these caveats that we're apparently supposed to hit in order to receive help.
00:44:09
Speaker
You don't need to receive help for any other reason than the fact that you lost your baby. That's it. There's no other caveats. And you can be completely feeling completely fine the next game going to work. It doesn't mean that you're not worthy of that support because you might be doing okay.
00:44:27
Speaker
You know, and vice versa, if you feel like you can't get the words out, then don't get the words out, but maybe do it with someone on the other end. You know, so there isn't a caveat of the way you're supposed to show up here.
00:44:40
Speaker
Just show up if you've lost your baby. That's it, you know, that's the only this the only connector. um maybe people will try and find you to say that they've loved you on the podcast. No, the main connector to find Samantha Rebeer support is because unfortunately um for the very reason that we're here.
00:44:58
Speaker
um And I wanted to just, you know, acknowledge as I could continue to be in awe of is that you do sit on the couch and do that. I think those elements that you say in that very relaxed sense can also, um I suppose,
00:45:15
Speaker
simplify the very big thing that you do as a volunteer. And I always point this out, like we have lots of people on Pink Elephants, even on the board, I've interviewed people on our show. And I always make a point that people are doing this with no mullah. Like, you know, this is because people care. And I think that it isn't to stay you know say to people that they need to be necessarily put on a pedestal. It's I'm trying to say, but I'm saying it gives you the idea of how much people value. There is no, you know, there isn't It's not monetary exchange for many people. It is a core value. It's ah a wanting to give or wanting to be there. So the service is very much there from people just like you, just like that. So, you know, it's amazing what you do.
00:46:00
Speaker
And equally, I want to invite, and I don't, i I can only assume that there may be some listeners out there that are actually um supporting someone who's experienced loss.
Supporting Others Experiencing Loss
00:46:10
Speaker
And I really encourage to leverage the service to get some support for, you know, the person that you know.
00:46:16
Speaker
um You know, we get, like, sometimes we get a couple of chats here and there, you know, of a mum wanting to understand how they can support their daughter or their son who's gone through a loss. You know, there's other times where we've had best friends or, you know, even a workplace, you know, just kind of chat to us to say, i don't know how to support my employee. It's just, it's service. And like, we can't give like medical advice or anything like that, but what we can give is, you know, lived experience and, you know, informed advice. We can say for us and, you know, every person's different, but for us, this is what we would have loved, you know, cooking us dinner, not getting us to think, helping us around the house. you know, making our lives as much easier, easier as possible rather than, i don't know, giving us some interesting comments. Yeah. Yeah. Or avoiding, or you know, losing eye contact or, you know, not running back to the text. You don't know what to say. I think it's a really interesting point when you say the home cooked meal, because I want everyone listening as well to take on board that point in that
00:47:18
Speaker
it's a lived experience response too. Like we understand as a community and as an organisation just how much that clinical lingo can be grading and challenging and and there is a reason why so many people that join the support groups and the support teams are people with lived experience because we understand what the language, we would have wanted the language to be but also the realities like sure, we have a very strong clinical aspect to our research and and everything that we do, but at the core of it, we're all humans that understand a human experience in its depths.
00:47:55
Speaker
And that therefore a lot of the time that will come across, we hope in the way that we serve, because that is essentially the, I guess, anecdote to what often a very medicalized sterile environment can be in this space. So We try and offer the other side as much as possible. So you will get support, but you'll get, as Samantha says, human ideas, humans saying to another human what potentially would be a ah nice connection point or a supportive suggestion that comes from that place, you know, and that stuff matters so much.
00:48:34
Speaker
Thank you so, so much for your time this afternoon. Thank you for sharing with me. I know that you didn't think the tears would come, but thank you for allowing them. Thank you for having a laugh as well, because often this can be tricky, even if you shared the story many times and do work in the space. And I really appreciate your time and all of the work that you do. So thank you for joining us on the podcast.
00:48:57
Speaker
Oh, what an honour. I feel, like I said at the start, it's a privilege. It's a privilege to be able to be there to support people and and I feel like my story needs to be shared so other people can have empathy when it comes to hearing other people that go through this experience and they can kind of go, okay,
00:49:15
Speaker
I get it now. i need to support my friend or my whoever because of because of because what they've experienced. Off the back of that, I know we were just wrapping up, but if there was anything, I just, I want to say that because you've said this a few times. and If there was one thing you would suggest a friend to do for a friend that is going through a loss like yours, what would you suggest they do?
00:49:39
Speaker
Oh, God, you're giving me one thing. like Can I give you two things? going to give you two very quick things. The first thing is, you know, sit there, don't say a word. Oh, sorry. Okay, let me let me start again and actually. Sit there, hug them and say, i am so sorry and I acknowledge that this is really hard.
00:50:02
Speaker
I can't believe it just it already impacted me just saying that, you know. And the other part is don't ask me how you can help me. Just do something, you know, don't ask ah if there's any way I can help.
00:50:18
Speaker
Of course I'm say, I don't Like, I don't even know how to help myself at this point, but I think. Go get them. go Go get a pizza and drop it off at their door. They might not want to see you. Just drop it at their door saying, I know you might be hungry. Just take it. Or barge into the house and do the laundry.
00:50:34
Speaker
Just acts of love I think is really important. I love that. Couldn't agree more. Thank you. No problems. Today's episode may have brought up some feelings that you need some extra support around, and that's totally okay.
00:50:49
Speaker
Head to pinkhelephants.org.au to access our circle of support, your space where you can be met with empathy and support through all of your experiences of early pregnancy loss.
00:51:00
Speaker
We're here for you. You're not alone.