Ladies, We Need To Talk - The grief no parent expects

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0:33radio, news, music and more. Hey ladies this episode includes stories about grief and child loss shared by two wonderful moms. Please take care while listening and you'll find some helpful resources in our show notes. I said please help my baby they pressed a button on the wall and there were 10 to 15 people around in within a minute. People say oh I don't want to bring them up to you because I want to upset you. I think it's important to remember that They're still a mother. You know, they are still a mother to that baby. That baby's no longer here, which is devastating, but that identity of being a mother is still really important to acknowledge and to validate. People who are grieving don't need to get better. They need time to understand that their life has become a new normal forever. Bringing a baby into the world is a much-anticipated, joyous, life-changing event.

1:37During pregnancy, you go through all these milestones, hearing a heartbeat, those ultrasounds, telling your mum and your best friend. And after the drama and upheaval of birth, between exhaustion and nappies and mountains of laundry, there's the joy of getting to know this tiny, perfect little human. But what if the worst happens? What if your perfect baby dies?

2:04According to research by Red Nose Australia, almost 1,000 infants under the age of one die each year. Now there's a saying you've probably heard that no parent should have to bury their child. For those who do, the loss is indescribable. The future they imagined erased, leaving them to figure out how to live in this new normal. So how do we continue in the wake of such grief?

2:32And if it happens to someone we love, how can we show up for that person? I'm Umi Stein. Ladies, we need to talk about navigating life after infant loss. He had the chubbiest feet. He was one of those real chubba-bubba-bubs. This is mum of three, Eddie. She lives in Sydney's northern beaches with her hubby, Aunt, and her son, Seb, was the one with the very chubby feet. Seb was that first...

3:11child moment that you have as a parent you know it's a life-changing experience and I don't think we recognize that as a first-time parent. He was just so happy like he loved his mom and he just brought so much joy because he would not perform he was one of those babies where it's like give us a smile you know do this do that and he just wouldn't he was like I will smile for whoever I want to smile for you are not getting anything out of me. That's delightful. Yeah he was beautiful.

3:39Like most first-time parents, Eddie and Aunt lived in a state of anxiety and awe as they watched this tiny human grow. He challenged me as most first children really do when you don't know what you're doing, but he just brought so much joy to myself and my husband. Eddie was home with six-month-old Zeb when he had a seizure. He just started shaking. He vomited a lot. I whipped him in the car. I drove him to the hospital. I walked in. I said, please help my baby.

4:09They pressed a button on the wall and there were 10 to 15 people around in within a minute. Seb was sick with a fever, so doctors thought the seizure was a possible side effect. Once Seb stabilised, all seemed well until a second seizure sent him back to hospital. The medical team discovered Seb had a rare genetic condition, so rare that doctors suggested Eddie look for online forums for parents whose kids had the same condition.

4:35So I found a mum in Adelaide and her daughter lives happily with what Seb had. And it actually helped with the list of medications that we were then able to give back to the doctors and say, this is how other families live with this. Eddie knew there'd be a long road ahead, but she thought Seb, like that girl in Adelaide, would be fine. But at 10 months, another seizure sent Seb to hospital where he lay unconscious.

5:01We were at one of the best children's hospitals in the country. We'd been there three times before. He was very unwell. He had a million machines tied to him. But I thought that we were there at the hospital for him to wake up. After a weekend in the ICU, a doctor met with Eddie and Aunt. He just said, I'm sorry, the damage is catastrophic. He's gone. His brain is dead.

5:26There's a million things going through your mind as you're just trying to make sense of what you're being told. There was definitely a moment of, why is this happening to me? Why have I been faced with this challenge? This, of course doesn't make sense. This baby three days ago was thriving and alive. And today we've been told that he will not make it any longer.

5:53Seb was on life support so Eddie and Aunt had time to call in friends and family for a precious and painful farewell. I would say Seb had 30 to 40 visitors come and kiss him and cuddle him and tell him they love him. We chose not to turn off his life support straight away because we asked what could come of this, could we donate his organs?

6:17Luckily they were able to find a match over the next 24 hours and he was only taken off life support through the surgery that occurred on the Tuesday afternoon. So about 30 hours after we were told that he had died. Going home that night I remember I just laid in his cot and I just cried. The next morning Eddie woke up to a new reality.

6:50My life was a maternity leave life. I was going to coffees. I was going to rhyme time at the library. I was going for walks with prams with my girlfriends. And that was very difficult because, you know, the best girlfriends didn't stop asking me. They wanted to know that I was included. But going for a walk without a pram or with a bunch of women who are pushing a pram, it was really, really hard.

7:20and finding that balance of, I have to put one foot in front of the other. This is my new life. He's not coming back. That takes a lot of time. It's just something that puts us in a completely different direction to the journey that we thought that we were on. This is Rachel Fasinas, a registered psychologist and director of bereavement services at Red Nose Australia.

7:52Over the past six years, she's spoken to over 200 families who have lost their children. Rachel says that when a child dies, there's a profound loss of their planned future. When you decide to have a family, you have all these hopes and dreams that you kind of prepare for and you plan for and then this experience happens to a family and all those hopes and dreams just change. And the...

8:18The way that we think our child's lives are going to go and the way they're going to live their lives is still there. It's still there for families. While the family might not look the same, the parents don't stop being parents. I think it's important to remember that there's still a mother. That baby is no longer here, which is devastating. But that identity of being a mother is still really important to acknowledge.

8:45and to validate that to mothers and to fathers they still are parenting that child that's no longer here but they're just doing it in a different way. Rachel says that even if families know they have a very sick baby it is impossible to prepare for death. I feel like there's always a point of hope that we hold to think that we may be the exception we may not be the rule and I think when The loss does happen and the death does happen. That hope is shattered for that family and that's maybe what they've been holding on to for all those months in the lead up to the birth. She says that people in the thick of it can be surprised by their own expressions of grief. No grief is the same for each person. It changes and it can be shock, it can be tears, screaming, yelling, silence.

9:42It can be humour, it can be trying to make other people feel okay. It just is so varied and quite unpredictable. So you may think, oh, this is how I'm going to respond or this is how I might feel. But in those moments, that completely disappears and it's such a raw, visceral response to what's happened to your family, to you and to your baby. So the first scan We just wanted there to be like a healthy sort of baby growing in there. Ladies meet Sky. About six years ago, she and her partner Tristan went for their first ultrasound. And the doctor's scanning and he goes, now here's one heartbeat and here's another. And we just absolutely lost it. We were like, are you kidding twins? And he's like, yep, twins. Sky and Tristan were pretty chuffed that on their first go, they'd ended up with not just one, but two babies.

10:41But they were also aware that twins carried a higher risk. And at eight weeks, Skye experienced bleeding. We rushed to the emergency at the women's. They did some blood tests and stuff and they said, look like your HCG hormone is still really high, especially because you're twins. So we think that they're OK. Skye and Tristan felt reassured that everything would be all right. They'd also found out they were expecting girls. But at their next scan, there was some bad news from the doctors.

11:10They noted in Twin B, which was Remi, they noted that she had really like low fluid in her sac. So the doctor was like really concerned and was like the fluid's low enough that I don't think your baby will be...

11:25alive, like within a matter of like days or even weeks. So that's like really scary to think about, that my baby's actually doing okay now, has a strong heartbeat, still growing, but they're telling me that her fluid is so dangerously low that she won't be able to grow any further. Over the next couple of months, Sky went in for weekly scans. Twin B, Remi, defied the doctor's predictions and continued to grow. Tristan and I, we...

11:52always had hope you know from like actually early on we said to ourselves when there's a heartbeat there's hope. And why was hope important to you and your husband? We just felt as though you need to I don't know look into the future and see something you know we envisioned that we would have our twins at home healthy with us and that these were just like hiccups along the way. At 20 weeks and four days Sky felt a pop.

12:20Remy's sack had ruptured. She was admitted to hospital and put on bed rest to delay birth as long as possible. Almost four weeks later, she went into labour. Remy, weighing 512 grams, arrived first. Baby River, weighing 576 grams, was next. They pretty much got whisked away straight away to the Niku. I was just relieved that they were born and from what I could see seemed to be...

12:48Okay, but I wasn't sure. And just, you know, were you taking my babies? Like they should still be in my tummy. Can you tell me about seeing them for the first time? So I knew that obviously they were in a quite serious condition, being so small, but knowing they were stable. Just, yeah, I'll never forget that moment of seeing both of them. You know, you always imagine what your babies will look like, but it's hard to know, obviously. I couldn't believe my eyes. They're just so beautiful.

13:18Over the next couple of days, Skye and Tristan stayed in the neonatal intensive care unit, the NICU, looking after their babies who were being kept in separate isolate cribs with feeding tubes and wires covering their tiny bodies. So we still felt like parents, but it was a weird feeling because, you know, we were like, they should be at home with us, you know. Skye was discharged two nights later and the new parents went to stay with Skye's sister who lived just a few minutes walk from the hospital.

13:47It was after dinner when Tristan got a call from one of the nurses. I could just see from the look on his face that something was wrong. The nurse told Sky and Tristan that the girls had contracted an infection and weren't responding to medication. So we need you and Sky to come to the hospital because we don't think that they're going to survive the night. I remember Tristan just burst into tears, but I...

14:14was just like, yes, okay, this is obviously really serious, but still a bit naive in the sense that I was like, they're not going to die. Because when we had left them a few hours prior and said, you know, Mummy and Daddy will be back later in the night to come say goodnight to you and be with you, they were fine. Tristan and Sky rushed back to the NICU.

14:34When we got there, there was like multiple doctors and nurses working on the twins, people coming in and out, and we saw just how sick they were. They did not look how they did prior, how it was prior. Both twins were extremely sick, but it was River who was weakening rapidly and the doctors recommended Sky hold her. They're like, look, we've maxed out every possible intervention.

14:59And there is nothing more we can do. Tristan and I sat in the chairs and they put River on my chest. And it held her if I think it was a little bit under an hour or so. While she was still breathing, it got to the point where I looked at the doctor. The doctor was looking at River and I was sort of watching the doctor's face. You know, she signaled to the nurse that her heart wasn't beating anymore. Called the time. And yeah, she said, I'm so sorry. She died. Remy was still holding on.

15:28so Sky and Tristan called their family to come and say goodbye. They put Remi on my chest and after a little while they also put River on my chest too so they could be together and that you know I could have my twins together as they should be which was really really hard it was so overwhelming I just couldn't stop crying. Sky do you remember the feeling of having both the twins in your arms? I do. What was the feeling? Having them in my arms, I felt full and content despite the situation. I just thought, I guess this is reality right now and we're together and that's what matters. Yeah, as devastating as it was, I felt like such an overwhelming feeling of love and protection for them.

16:20As it had been with Remy, a doctor indicated the moment when River's heart stopped. We all just completely broke down. Tristan and I had been sobbing the entire night. But just having such a final, you know, like after Remy dying too, it's like, oh, and that's, yeah, well, okay. So they just, they just died. Like, what the hell now? One of the hardest moments for Skye after her girls died was when she and Tristan were leaving the hospital. We...

16:50Got into the lift and yeah a mum comes in with her newborn twins and I remember they got out of the lift first. I just like broke down crying It was just so painful just like another stab to my chest Yeah, and Tristan just held me and he just said you know just let it out. I think when hope is shattered then the shock and the trauma and the grief is so overwhelming and so painful and devastating that it just can no longer be contained and that's when we see it in families in those really acute times. This is registered psychologist Rachel Fasinas again. Rachel has helped hundreds of families process their grief after losing a child.

17:35We all have these platitudes that we say like time heals all wounds you know over time it will get better and to some extent that is true time is very healing and it does give us the opportunity to process and to make sense of what's happened for us but I think on the other side the grief is always there you know maybe five ten years later.

17:59and you may watch something or smell something or see something that triggers off a memory or your grief and it's like it happened today. Families often track significant dates that they should have shared with their child. That child is a part of their family unit and people like to remember that through the different milestones that happen like first day at Kinder, graduation, birthdays.

18:25They may also keep their child physically present, sharing photos and keeping mementos. There's been great research around the impact of memory making and how it can not change grief but how it can give great comfort over time. It's very much guided by how the family would like to do that.

18:47I think photos, hand prints, footprints, locks of hair, beautiful fingerprints if you can do them, anything that's going to provide the family with the opportunity to engage in those beautiful parenting moments. Rachel, you've spoken to hundreds of women who've experienced loss. What are some of the things that we can do if we know someone has lost their baby? We get asked, all the time. It is the thing that makes people the most scared. And generally I find they are petrified of saying the wrong thing. So they don't want to make it worse. They don't want to bring things up for people or remind them of something bad that's happened. But the thing is Rachel says that generally people who have experienced the loss of their child want to talk about it.

19:35They want to hear their baby's names. They want to have their baby acknowledged in the world as important and a part of our family story. And because we're so anxious, because we don't know what to say or do, we generally either say nothing and we avoid it, or we use these platitudes.

19:56like the words at least. Well at least you could have another baby, at least you have other children you can focus on to use sort of Brene Brown's phrase of we're trying to silver lining something. I think with this type of grief and this type of loss it's not something that you can solve. If you can sit with someone in their grief, if you can sit with someone in their pain that is just the most beautiful thing you can do to acknowledge it, witness it and for people to feel seen and heard and the small acts of kindness of acknowledging the baby's birthday or saying their name, you know, when you're talking about them or acknowledging the anniversary. I think a very small acts of kindness that have great impact for a family.

20:45Not every family will go on to have another baby, but those who do can experience conflicting emotions. I think it can be soothing. I think it can be helpful in some ways, but two things can be true. We can find something joyful or we can feel really sad and really upset still. So those two things can be present for families who make the decision to have another baby.

21:13For families who have experienced the loss of a child, the time leading up to when their previous loss occurred can be filled with terrible trepidation. So the things that were quite joyful and exciting and things that we all looked forward to when we were pregnant around hearing the baby's heartbeat, getting a scan, going into the doctor, all of those things now have a sense of dread and a sense of I don't know what's going to be told to me, and there's just low-level anxiety all the time. I felt like I couldn't enjoy the pregnancy because I was now aware of, like, the reality of what can happen to some women and their babies in pregnancy. It's not all perfect. This is our mum of twins, Skye, again. About 10 months after she lost her girls, Skye conceived a daughter, Rain.

22:10I was just so eager to have a healthy, full-term baby, like, Earthside. After the twins died, I just had this, like, extremely overwhelming urge to have a baby in my arms. Of course, no baby could ever replace Remy in Rivar, but it was more so just that maternal urge that, like, my body had given birth, and it knows it gave birth, and it's like, I just... My arms were empty. After rain came another girl, Ruby.

22:39The two girls, now aged four and three, understand that they are a part of a family of six. I have always spoken about the twins lovingly and openly to Rain and Ruby. They might not know detail, but I just tell them factually and in a child-appropriate way, like what happened, that their bodies were sick and they stopped working. So we all keep their memory alive by talking of them, you know, so.

23:08They're still very much a part of our lives, just in a different way. It's outside of the family that Sky encounters reluctance to acknowledge her daughters. There's a very common misconception that people say, oh, I don't want to bring them up to you because I want to upset you. But why would you upset me or remind me that my own children have died? Like, you couldn't possibly remind me it's in my head every waking second of my existence.

23:38Seb is so alive in our family. The kids do a lot to help with that. If anyone asks our kids if they've got brothers and sisters, they will say, yes, we've got one brother, but he's dead, which is always great to see people's faces. It's like, kids tell the truth. After Sydney mum Eddie lost her son Seb eight years ago, she had a son, Dash, and daughter, Illity, who have an active connection to their older brother.

24:05We take a little bit of his ashes every holiday that we go on and we sprinkle them. So the kids do that. So they're very involved in that. Seb remains an important part of the family's life. And while time has softened Eddie's grief, he's still very present in her thoughts. On his birthday, we make a cake. Got a woman's weekly. The kids love it because they get cake for breakfast. And then usually we'll have a family day. He's got a special commemorative place where we go where he's got a plaque on a lovely rock.

24:34And we usually go to Seb's Rock for a walk and usually the emotional build-up to that week is the hardest for me. It's usually not the day because I think the day is celebratory to a degree. It is just that reminder that the pain doesn't dissipate in any way. It's just that the pain is not your first thought in the morning anymore.

25:01After Seb died, Eddie became part of a very special club. A girlfriend bought me a book and a card from a local gift shop. And she said, oh, the woman in there was really lovely. She wants you to go and see her.

25:17And a few months later, I went in and I asked for her and I said, oh, my friend bought me a book and a card here. She said you gave it to her for free and she didn't really know why. And the woman just hugged me. And she would have been in her, I would say, late 50s. And she said my first son died when he was 16, 30 years ago. His name is Max. And I just want to tell you that I love you. It's just a kinship. There are differing layers because...

25:48you can see how it can overwhelm. But for her to be able to say her son's name to me, you can see that relief. It's just this like outlet of love that doesn't get to happen every day. Tell me about how your friends and family rallied around you and aunt after Seb died. We had amazing support. I think it's so hard to know what to do when people are grieving.

26:19the smallest things can mean so much. And one of my girlfriends just used to make my bed every day. And most days I wouldn't have even known she was there. So she came to my house consciously probably for two to three weeks and spent two or three minutes there and made the bed. And that was just an incredible act of kindness. And that kindness like stays with me and just means so much because there is nothing you can do.

26:49And I think that's where people stumble over their own words or their own thoughts. They're trying to make it better and you honestly can't make it better. So to sit with people in grief to just say, this sucks. We are here. We are uncomfortable. We don't know what to do. That's the lifeline because people who are grieving, they don't need to get over it. They need time to understand that their life has become a new normal forever.

27:19Losing Seb opened Eddie up to opportunities to support other families going through grief. She volunteers on the Red Nose Peer Support phone line and when she joined me in studio, she was 21 weeks pregnant. But the baby she's carrying isn't her baby. I'm actually carrying for a friend and they have lost a child as well. What an incredible gift to carry this baby for a friend.

27:44So I guess he's been a journey. I've always wanted to do it and I think that being able to help a family who just can't. I think that fertility in itself is such a struggle for so many and it really wasn't for us. So being able to do this particularly for a family who understands the loss and that was one of the connections that we had when we first met is just, I just feel like I'm helping one little bit.

28:13Did you consider having more children after Elodie? No. If you'd met Elodie, you know why. Actually, when I was pregnant with Elodie, I did think I wanted another one, another live third child. But after we had her, I was like, I have had three children. I'm the first person not to discount Seb. I have three children in my life. I tell everyone I've lost a son. It doesn't discount him in any way. He was here.

28:42Thanks, Eddie. Thank you. And thanks, Seb. Seb. It's all Seb. If you or someone you know wants to talk about infant loss, Red Nose Australia has a support line that's available 24 hours, seven days a week. The number is 1300 308 307. This podcast was produced on the lands of the Gadigal, Moanena and Daruwal people.

29:09Ladies We Need To Talk is mixed by Anne-Marie DeBettancourt. It's produced by Elsa Silberstein and Sarah Mashman with additional production from Emma Morris. And our executive producer is Tamar Kranswick. This series was created by Claudine Ryan.