Today we talk to Founder and Director of @naturalgraceaustralia Libby Moloney. It is a truly beautiful and at times heartbreaking conversation about the 'next steps' that a family can take if their baby dies.
We hope everyone listens if only to help support friends, family, strangers who might be going through the heartbreak of the loss of their baby.
There are some incredible resources for everyone to access who may have experienced pregnancy and baby loss and for people who may need support after listening to our podcast.
Brigid: Welcome everybody. This is episode 40, which is part two of our discussion of when a baby dies. In this podcast, we're going to discuss perinatal death in more detail with death care consultant and funeral director, Libby Moloney from natural grace.
Dr Pat: Libby is an expert in the sensitive and complex area of death care for babies.
And provides extraordinary leadership in this space. She's also my sister and she's kindly agreed to join us for part two of this special episode of the key pregnancy podcast.
Brigid: And I'm going to put a little bit into about that. And that is that Libby is the
person who actually introduced us and is very, very in our hearts.
Brigid: [00:01:24] So Libby, you know, we're talking about the death of a baby, and it's hard because unlike adult death, it's nearly too much for all of us to bear. What do you think? Should this be listening for everybody?
Libby: [00:01:37] Ideally? Yes. So, you know, in, in more recent years there's been a lot of endeavor around creating a community that's more death literate.
And so if we do talk about these things, if, if you can sum it up, you know, uh, courage from within you to just even consider what would happen if my baby died, or if that's too hard, how would I be a friend to someone if, if their baby died and become even just a tiny bit more comfortable out of this podcast, then I think that's good for us across the board in our life. You know, whether our grandmother dies at 95 and it's a more expected death or just the heartbreaking death of a baby.
Brigid: [00:02:24] Yeah. That's what I thought you'd say. But you know, in my experience and when I was pregnant with the boys, like I would just avoid anything that was bad news or anything that talked about a complication. That was just my coping mechanism as such. So I don't know it's hard, but I think because of our dinner table conversations, you've really made me aware and I really hope that that comes across in our chat today. So it is very hard to find the right words for friends and families and, and, you know, and I'm imagining even the people who are going through it themselves, like what do you hear people describe what's happening to them?
What are the words they use?
Libby: [00:03:07] Loss is a big word. So harking back to the concept that we just spoke about, about literacy, one of the primary things about death literacy is calling things by their proper name. So I know one of your other podcasts you you've talked about, you know, we talk about to our children about babies are born and they come out of a woman's vagina, but don't make up some mysterious word about it.
And we talk about it and the same with. Death. And so we'd be really careful about, you know, not saying the baby is sleeping, I'm going to say the baby has died. Well, words are really important, but loss is actually a really important word in this landscape.
To the parents and what they talk about and at varying stages of pregnancy, that language changes a little bit, but there's enormous loss of dreams and hope and fun and excitement and anticipation. And that's true for the parents, particularly for the siblings, even little children, but for grandparents and aunties.
I'm an auntie to four beautiful boys and a whole whack of others. And you know, there's loss, there's deep loss. And so that's probably the word that primarily comes out. There's a lot of challenge of course, around how people make an announcement in the use of language, to say what's happened when their baby dies, because nearly, always it's an expected death and making an announcement.
“Now this morning our baby was born, but also this morning our baby died”, You know, there'll be big use of language for families, but I would say loss is the biggest word.
Brigid: [00:04:53] And are people using pregnancy loss or baby loss?
What’s the terminology that's the most compassionate?
Libby: [00:05:01] The mama tribes have determined a lot of this themselves.
So there's a difference between the language they use and the medical terms, medical terms make things always kind of a clearer in a way or make more, a lot of sense, but they'd often grate up against the emotional experience of the parent. Yeah. Yeah. So the women, and male parents as well, have developed a lot of language for themselves. And one of the, sorry, that might be going off track a little bit, but one of the best examples of that is they've started to develop the word compassionate induction. Which we would know as a medical termination, but they're talking about using the word compassionate in that decision.
So they're claiming a lot of that language.
Dr Pat: [00:05:53] Yeah. And that does make sense because, you know, we've got a lot of emotional value, I suppose, wrapped up with some of those terms. And so it's not, it would be one of the hardest decisions that a parent would make. I think, to go through a medical termination or a compassionate induction because of a reason that their baby wasn't going to survive.
And we're going to cover all that, you know, within that broader podcast
Libby: [00:06:18] Yes. That's a really interesting point in our experience here is there's a, I'm not going to say it's an exact thing, because that would be wrong, but there's a point somewhere about the mid pregnancy where the language changes from pregnancy loss.
So. You know, to us that implies the loss of the experience of pregnancy, the loss of the anticipation of the end of the pregnancy and the loss of that to the woman herself. Yeah. And then somewhere around 20 ish weeks. It converts to the baby's born still or a stillbirth or my baby died.
Dr Pat: [00:06:59] Yeah. As distinct from a miscarriage or pregnancy loss yes.
Libby: [00:07:03] And it's like the further into the pregnancy, the family get the more the child takes on an identity of its own,
Dr Pat: [00:07:11] which makes sense. Doesn't it?
Libby: [00:07:12] Yeah, of course it does and, it becomes more real to those outside of the mother, too, that they can start to feel the kicks or you're starting to buy the babies and stuff, you know?
Dr Pat: [00:07:26] yes you’re setting up the nursery.
Libby: [00:07:28] That's right. So you start to get an identity. When people start to think about what your name might be or that they've bought you a Teddy bear, or they can feel you kick them. It seems to take on a different scene.
So that language changes. Seems to change from pregnancy loss to the death of a baby in that mid 20, 21 weeks.
Dr Pat: [00:07:48] Okay. So we've already talked, you know, earlier in this episode about some of the circumstances that might lead towards a couple having, for example, a term stillbirth, and as a, as someone doing your job in death care and as a funeral director, what are the next steps for people that you're involved in?
Libby: [00:08:11] So wonderfully hospitals have become a lot more comfortable themselves in managing the death of a baby. So if a baby's born, born in hospital, a lot of the immediate care and especially in settings where they're really focusing on bereavement care and they've often got a nominated bereavement midwife.
So the very earliest stages after the birth of a baby that was born still is connection and making sure that the mother and the baby really connect and that skin to skin contact is still absolutely imperative. That the wonder of the body of your baby is still just as magical. And that experience is still really supported.
So we're seeing some really good results in families that have experienced really what's end of life care. So preparing for a birth when the baby has died that, knowing what their rights and choices are after the baby's born and feeling supported enough to really seize those rights. So, you know, that connection would be the very first thing.
Dr Pat: [00:09:18] Yeah. So what are those rights and choices that you're talking about? What are we doing better these days do you think than perhaps was done in the past?
Libby: [00:09:25] Well, not taking the baby away for starters. So it was considered compassionate for a very long time to whisk the dead baby away. And fortunately for some time now, that's changed.
And so, you know, a really experienced good midwife will be able to step in and midwife that experience as well as if the baby was alive. It's quite an extraordinary thing to watch, but you do have the right to keep your baby with you. There is no time restraint at that stage. There's no time restraint at all.
You don't need to move quickly to do anything. So there's lots of, I suppose, being aware straight up that you don't have to do anything. You can keep your baby with you. The invention of the cuddle cot has been a big step to maintaining, you know, connection between the family and the baby and keeping the baby.
Dr Pat: In the room. Yeah. So what's that?
Libby: A cuddle cot is like a gentle little cooling system. So if you can imagine, if you, if you took it tea towel, when you folded it in half, and that's the sort of size that you've got, then that is a little pad, just that size. And it sort of stretches along with the baby's body and a little generator, a little tiny unit, sits next to the cot on the bed and it pumps cold water through that little pad and a little pad cools, the baby's body down. So it's like having a mortuary standard care of a person that's died, whether it's for a baby or an adult, but it's portable and the family can have that with them.
So the baby gets a little pad put on its body and then get swaddled up in all the bunny rugs. Blankets or whatever family would like, and you can still hold the baby, keep it closed, sleep with the baby on your chest, put the baby, into the cot next to the bed, whatever you would normally do in the meantime, keeping the baby's body nice and cool and, and giving the best chance for what we know will come.
Commonly an experience that happens with families is. You know, someone's traveling, maybe not at the moment, but usually someone's traveling and we know that they want to see this baby, but they're not going to be able to get back for a couple of days. And so if we introduce cooling to the baby's body and keep it in the very best condition that we can right from the start, then we know that we're preserving the best viewing experience for that person's and that's coming by keeping the baby and nice and cool.
Yeah, so they serve a really good purpose.
Brigid: [00:11:58] And is the mum usually still in hospital when all this is happening or can she actually take the baby home with that cuddle cot?
Libby: [00:12:04] Yeah, she can take the baby home with that. And then we're seeing a combination of those experiences. So there's families who would probably practice home based death care for their elders as well as, and so taking their baby home is a very natural feeling to do that most commonly.
For young, young people and young families that are, that are of childbearing age in the first place. This is usually the first funeral that they have to organize.
Dr Pat: [00:12:32] Yeah. Got it.
Libby: [00:12:34] It's not uncommon for them to not take their baby home. It's a wonderful idea. But in reality, I would say probably 10% of our families actually do it.
Wow. Okay. Yep. And the reason mostly is the hospitals are doing a really good job. So by, you know, the human existence will, will start to move from the shock of a desk, into the next stage of bereavement in and around the third day. And so for hospitals that can support grieving families to stay in hospital with the known midwives, all the support that comes, the protection that comes, um, then they commonly, by the time they leave hospital on the third day are ready to allow their baby to be transferred into our care.
Dr Pat: [00:13:22] Right. Yeah. And into the care of a funeral director. Do you have to have a funeral care provider?
Libby: [00:14:45] No you don't. Okay. So the law around the death of a baby is that if the baby is born alive at any gestation or born after 20 weeks, and there's some weight components to do with that, but usually whether the baby's born after 20 weeks or alive at any gestation, then the baby's needs to be registered.
Alongside its birth registration and the baby's body needs to be laid to rest and taken to an actual cemetery for burial or cremation. That's the only law. There's no law that says a funeral director has to take the baby there, a parent can take the baby there. And we do that. We facilitate a lot of families exercising their right to do that.
And they'll come in, you know, buy a little wicker basket coffin from us and collect their baby from the hospital in the, in the basket and drive the baby to the crematorium themselves. Very empowering and very brave, but wonderful. But most families would use the care of a funeral director to an extent.
Brigid: [00:15:54] Because it's just a level of complexity and I don't know, practically that I just don't imagine I would ever need or hope to need or want yeah. Having someone taking control of that at that moment in need. I think it would be kind of, my preference.
Libby: [00:16:10] Yes and it can just be a gentle guiding voice. You know, just someone that can say, you know, this is what you can do.These are your choices. Take the time you need to consider your choices, make a fully informed, empowered decision. And then we'll take the next step. But, um, you know, that's the most, just a little, little asterix there, a if a baby's born under 20 weeks and is born with no signs of life. So the baby has died before it's born, then you do not need to do anything.
And you can take the baby home and bury it in your garden. If you wanted to, or you can ask the hospital to take care of the remains of your baby,
Dr Pat: [00:16:53] which is by cremation, I think, is that right?
Libby: [00:16:55] Yeah. Usually by a cremation. So most hospitals would have, what's called a respectful cremation and that sort of a low cost disposal sounds horrible, but a disposal because they're really considered products of conception there not, it's not considered a registered birth
Brigid: [00:17:14] But you tell a mother of a 19 week baby. Yeah,
Libby: [00:17:20] yeah, yeah, it does.
Dr Pat: [00:17:23] That's not to say just to interrupt it. If you, you can still have. A funeral director and a funeral. If you lose baby at 18 weeks, that would be at your discretion. Yeah.
Libby: [00:17:34] A hundred percent.
And there's been a little bit of sort of murkiness around that. There's been some sort of people that say you have to have a funeral. If your baby's born after 20 weeks and you don't, you have to register the baby's death and you have to dispose of the body in a cemetery, but you don't have to have a funeral because a funeral implies a ceremony.
And the same with less than 20 weeks, you can have the whole works. If you want to be full funeral, cemetery, burial cremation, the coffin, everything. And we we've done that babies as little as 11 and 12 weeks.
Dr Pat: [00:18:11] Really. Wow. Yeah. I guess that felt right to the family.
Libby: [00:18:15] Yeah. Yeah. It's unusual at that gestation, but if you've had eight goes of IVF and this is the one precious pregnancy that you've had, then there's a lot of loss that goes with that.
And the experience of honoring life and ritual and ceremony is very powerful in helping those families integrate that loss into the next stage of their lives. So there's, there's a lot of role for it in certain families, but most commonly it's with older babies.
Brigid: [00:18:44] Yeah. With those older babies or anyone, like how common is it to have a full funeral service?
And what does that look like for people?
Libby: [00:18:54] Yeah. Yeah. So the most common thing that we would do here is what we call a gathering. That's where families would come together. It might be in one of the reflections spaces or chapels. There called it cemeteries, you know, just gather their family together and acknowledge that the baby.
You know, as part of their family unit, sometimes people bring flowers. Sometimes they bring a little present that they would have otherwise gifted to the baby and they just come together as a bit of a family gathering. And then we would proceed from there for the cremation. And that's probably the most common we see.
Some people do have full funerals. And by that we mean, you know, there's a celebrant and there's a sort of structured ceremony where people might do readings and talk about that. And we, we do see, you know, probably 30% of people do that
Dr Pat: [00:19:47] commonly with a baby that was born alive and died later?
Libby: [00:19:51] Not necessarily, more commonly with posts 30 weeks.
Dr Pat: [00:19:55] Yeah. Okay.
Libby: [00:19:56] So yeah, the older the baby, the more likely the family are to have a full funeral and you know that the importance of it, of a funeral, whether it's a gathering or a full ceremony, is it's impossible to say goodbye to someone, if you haven't said hello. And so ceremony of some description actually does let those parents say, this is our baby. We're introducing you to our baby and had our baby lived they would have gone for Bubba chinos in, you know, such and such cafe with this mother's group. And they would have gone to dad's work at other or whatever it is that tells the story of what would have been.
And what we're seeing is that when families actually say hello in that way, when grandma has knitted them the blankets that she would have otherwise gifted the baby and that still comes and all those things happen. Then they can turn around and say, now we need to say goodbye, but we're saying goodbye to someone that we know.
And we've recognized the life.
Dr Pat: [00:21:00] Sorry, we're just having a little moment here
Libby: [00:21:02] studio. Oh, sorry. Darlings. No, we're good. You're good. It's very powerful. But just because something's hard. Very very rarely means that it's bad. Yes.
Brigid: [00:21:18] And the power of ceremony, like, you know, we just, we get that. We really get the power of ceremony.
Libby: [00:21:26] At every stage of our life, every yes, absolutely. When you're condensing all of that into, you know, a week or 10 days. Yeah. Humbling honoring role that we get to play as holistic funeral directors is to step into the lives of another person and say, may we offer this? And if we start with saying hello, then very gently over the period of a week or 10 days, we can move with that family to a point where they can actually say goodbye.
Dr Pat: [00:22:02] Yeah, that's, that is amazing work that you're doing. And it's, it's interesting as the, you know, from the obstetrician's point of view, you know, as part of our job, we get that unusual level of insight into the families that we look after, and there's this great sense of responsibility to do it as well as we possibly can.
And in this situation of a. You know, for example, a baby that's born still at term, that was an unpredictable and unpreventable. We're very quickly turning our attention, as doctors do, on what can we do for next time to help people go better next time. And, and that's kind of part of the medical model, but we need the help from you guys to make sure that this time is done properly.
And then the thing that never ceases to amaze me about people coming back is that they're unbelievable resilience
Libby: [00:22:57] yeah. Just makes you stand back and bow, doesn't it like, you know, you are so brave. Yeah. It's extraordinary. And there was always considered a sort of thing that if you, if you had funerals for babies, if you let mothers take them home, that they would attach to them and never let them go.
And that is not our experience at all, that there is a, there's a sensible, moderate point between proper recognition of the life that they've carried the ritual and ceremony of saying goodbye to anyone puts families in a better place to start the next stage. Yeah. So we call that integrated end of life - death, after death, funeral and early bereavement.
So you mentioned that on the spectrum and if you get every step of that as solid and as good as you can, the next step is going to be better. Yeah. So this is where that, as you say, Pat, that, that moving between this, you know, profound loss for a family through to the next pregnancy and all the anticipation that comes with rainbow babies and the whole, you know, it's such a torturous time really, but.
We can do better if we've registered in the constellation of the existing family, this first person and this first person, then we are seeing parents being a much better place to move through to the next pregnancy. This has done really well. Yeah.
Brigid: [00:24:32] And other ways, you know, it's ceremony and it's ritual, but I follow a few people miles apart, life with Sarah Jade and I read another post last night about a woman who had a late term pregnancy, well baby death and all of them said how thankful they are, that they took photos at the time. And it's something that you just don't think about. Is it?
Like, you just don't think that I'd be wanting to take a photo of my baby that's died, but you know, that must be such precious mementos.
Libby: [00:25:01] They are, they are. And I think there's an obligation. How, how firmly I feel about this! I think there's an obligation on the professionals around a family and in particular, the doctors or obstetricians, and midwives to exercise, some gentle intervention when families say, no, I don't want to that, to be brave enough to step in and say, I respect your decision.
My experience is that families often do want them in the future. Yeah. Would you allow us to take these photos and keep them on a file here at the hospital or the doctor's rooms or here with us at the funeral director and just in case you never have to see them, but there's a very tempting moment where the family says, no, I don't want something.
And it's so important as, you know, patient centered care to respect the instructions or wishes of the patient that we do that sort of blindly and go, yep. She said, no, That's it, we're not doing it, but this is one where I feel where there really is a place to step in and say, yes, I respect that. May I offer a suggestion about what might happen in the future and with children when we do children's funerals here, if a family chooses not to record the funeral or take photos at the funeral, we've had such trauma from that, that we now ask families to sign a document that says they were recommended to record their child's funeral.
And they've refused. That's sort of, that's a big deal for us because well, you're really following families, but you know, they're more likely than not, will be a time where those photos would be really precious and heartfelt. It's such an extraordinary job that, you know, The family is actually attached to those photographers and they become part of the story of that future.
And Heartfelt are an amazing organization extraordinary. So it would be something that certainly we would encourage here.
Dr Pat: [00:27:05] We've certainly got those memories folders at our hospitals and people come back 10 years later to see what what's there. Yeah. And it might be just some photos in a, the footprints. And, um, I've certainly seen that happen.
Brigid: [00:27:22] Libby, what are some of the other organisations to help people at this point?
Libby: [00:27:27] So, you know, sands, uh, constantly upgrading and rejuvenating their materials and their support to keep up with, you know, modern trends and we're families are at. So, you know, it's good, solid evidence. You know, Pinkelephants support network
It's a really good organization. They do a lot of support for miscarriage. Red nose have got great resources. Bears of hope have got good resources as well. And then you sort of looking at, you know, if you sort of listening to these podcasts from a professional perspective, the perinatal loss center has excellent resources and excellent training and offers.
Yeah. Offers really good, you know, actual support for health professionals as well as bereaved parents.
Dr Pat: [00:28:13] Yeah. I still think that this area is not covered terribly well in the baseline training for doctors or midwives and other people, and probably for funeral directors, it's still something that going and getting some additional training in if you want to, or need to be involved is a really great idea if only to be up to date with contemporary thinking on it, and also on what people are going to start asking for as the families become better informed.
Libby: [00:28:46] Yeah, and that that's true across the whole population, but in this field last year, we haven't done it this year with COVID, but last year we ran a repeat weekends on a full weekend of training that we call when a baby dies and we were just booked out, totally booked out. The midwifes in particular are desperate for more training.
To presume to sit in the space of someone who's experienced such profound loss. You need to know what you're talking about and you need to be comfortable yourself. You can't talk to someone else about their dead baby. If you can't say those words, if you can’t say your baby will need a coffin, your baby might need an autopsy.
You know, you need to be in a really comfortable place yourself before you can presume to sit in the space of another. Hmm. And so exploring this training and when we ran that workshop, the first time, it was very much about providing information. This is the law, you know, these are the kinds of coffins that are around.
This is what cemeteries do that sort of thing. And what we found very quickly was that we actually needed to, um, the participants needed to come to two sessions. One was their own biography of death. Their own losses, their grandparents lost their own. Exactly.
Dr Pat: [00:30:04] Get that on the table first,
Libby: [00:30:07] right? Yep. And all the tears and the, you know, needing to get up and walk away and all those things had happened first.
So yes, it went from a one day workshop to a two day workshop very quickly and of all the times in life to presume to be able to sit with another person it's around the death of a baby. Mm,
Brigid: [00:30:28] Lib that has been just an incredible conversation. Thank you so much. If someone who is listening to this is in this situation, when exactly do you need to call someone like yourself?
Libby: [00:30:40] For an expected birth of a baby that's died. Um, we would really encourage someone in the person’s support network, itt might not be that the parents are up to it, but we'd really encourage someone in the immediate support network to call and make a bit of a plan. And just to hear a voice that they can connect to before the baby's born would be ideal.
So we were caring for maybe a hundred or 120 babies a year here, which is a lot for an individual funeral director. Most funeral directors would do one or two with families that they've already got a relationship with. So we've got quite a broad scope here of experience. And most of the funerals that care that we're providing is to a known death.
Yes. Yeah. So most people do know that their baby has died. They might've added, might've only been 24 hours before 48 hours before that most of them are, you know, a Pat, you give me the language that you would use, but you know, a sort of an unexpected death during labor is pretty rare.
Dr Pat: [00:31:47] That is extremely rare that, yeah, that's the thing people are super worried about, but actually that's, that's a very small percentage of what we call neonatal deaths, deaths happening around the time of the birth. Yeah. So much, much larger numbers diagnosed beforehand on ultrasound or babies with various syndromes that were expected not to survive to full term.
Yes, but the diagnosis was known.
Libby: [00:32:11] Yes. Correct. So having a plan before anyone dies is a really good idea and makes a big difference. So ideally that the family would contact us as part of their care team before. Now that we've got building really strong relationships with their midwifery teams in hospitals, across Melbourne, in particular, we're starting to see the benefit of that.
And that's starting to be a practice, a shared practice or collaborative approach. Between them and us. And, but of course, if afterwards the baby's born and the midwives are supported that attachment time and the families are already, we, we most commonly would hear often from dad in this sort of 12 to 24 hours after.
Brigid: [00:32:58] Yeah. Thank you so much. That's just an incredible career choice of where you are in life to be supporting them. It's a calling, isn't it. And every time I listened to you speak, I think you've got such a calling for this. So thanks for sharing that with us today. Thanks for coming on our show, but thanks for doing the work in the first place.
Libby: [00:33:21] Well, thank you. That's very kind. It's a profound honor. And the women that have joined me, three particular members of our team, the honor, and the respect that they extend to other people's babies would take your breath away.
It's amazing. Yeah. We're, we're very lucky. Conscious incredibly conscious of how trusted we are. The people occasionally on my mum will wrap a baby and I'll say here, go to Aunty Libby and Oh, wow. Wow.
Dr Pat: [00:34:02] Yeah. Well, thank you again. It's been no, it's been terrific. Thanks. Thanks.