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Episode 14: Legacy of Leo

 

 

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This episode is dedicated to Leo ♥.

Episode Guest - Jess Clasby-Monk

Jess is a 37 year old mum of two, Eli who is here, and Leo who isn’t. With her wife, Natalie and after several years of fertility treatment, Jess became pregnant with Leo in 2015. Sadly, at 37 + 1 day pregnant, Leo died. Shortly after, and as a way to process everything that had happened, Jess started writing about her experiences via The Legacy of Leo blog. In this time, she has advocated for greater awareness of LGBT+ baby loss experiences, and has created a peer-to-peer community space on Twitter, and now Instagram, called Baby Loss Hour.

 

 

 

Jess Leo's Mum

Summary:

Where do you turn when your baby dies? How do you express your loss, connect with others, and find some comfort? What happens when you go on to have a child after loss? Whilst finding a creative outlet for her own grief, Jess reached out and created online spaces for others facing similar challenges. Find out about the Legacy of Leo, #BabyLossHour, Advent to Remember, and the ups and downs of navigating family life. 

Organisations:

LGBT Baby Loss: https://thelegacyofleo.com/lgbt-baby-loss/

Baby Loss Hour: https://thelegacyofleo.com/babylosshour/

Advent to Remember: https://thelegacyofleo.com/adventtoremember/

SANDS charity offers a range of support 

Here’s an interview with Professor Alexander Heazell 

Tommy’s charity offers support around pregnancy, birth and loss

Jess’s blog about Leo’s funeral

Richard Boyd’s blog Shoebox of Memories

Aching Arms offers help and support you when you’ve experienced the heartbreak of losing your baby, during pregnancy, at birth or soon after. 

The Miscarriage Association are here to help you through.

ARC (Antenatal Results & Choices) is here to support you if you receive a scan result that shows your baby may not be developing as expected. We give you the information and support you need to make your own decision about what to do next.

Saying Goodbye provides comprehensive information, advice, support and much more to anyone who has suffered the loss of a baby, at any stage of pregnancy, at birth or in infancy

Allsorts Parents & Carers Service emerged in 2013 in response to the need for parents/carers of children and young people who are Lesbian, Gay, Bisexual, Transgender or exploring their sexual orientation and/or gender identity (LGBT+), to connect and provide each other with support, community and friendship. 

The National Bereavement Care Pathway was initiated by the All Party Parliamentary Group (APPG) for baby loss. Piloted in 11 sites in 2017/18, the NBCP is now used in 99% of NHS England hospital sites.

Saving Babies Lives report 2024

The Report of the Morecambe Bay Investigation 

Ockenden Maternity Review (Nottingham)

All Party Parliamentary Group for Baby Loss

Baby Loss Awareness Alliance supports Baby Loss Awareness Week and the website explains the ways that individuals, groups, and organisations can join in to raise awareness and support loss. 

Sibling Resources: 

Precious Little People book: https://joeltcp.org/product/these-precious-little-people/

The Story of… books: https://www.lossbooks.com/



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Episode 14 Transcript:

LEGACY OF LEO (1)

Debbie Enever, Host

Jess Clasby-Monk, Guest

[00:00:00] Hello. This is the Bereaved Parents Club podcast. It’s the club none of us want to be members of, but here we are. My name is Debbie and I’m a bereaved parent. This podcast is for all of us to share and celebrate the stories of our children and offer support to each other. Each episode will explore topics that have relevance to us as we navigate the world as bereaved parents.

Whether your loss was last week, last month, last year, or even last century, you are welcome here. And whether your child was a baby, a youngster, a teenager, an adult, or even a parent themselves, you are welcome here. Please be aware that each episode will deal with themes of death and loss.[00:01:00] 

Leo Phoenix was born sleeping on the 17th January 2016 at 2.33am, weighing 6lbs 4oz. At 37 weeks and four days. His mum, Jess, and her wife discovered that Leo had passed away just a few days earlier. They’d spent the previous three years on a journey of three IUI cycles and two IVF cycles to give them Leo.

Since then, Jess has created a lasting legacy. And in this episode we’ll find out more about it. Jess, welcome. Thank you for joining me today. 

Thank you for having me. 

I’m really pleased that you’re willing to share your story with us today. And this episode is scheduled for National Baby Loss Awareness Week in October. So I really hope it reaches both those parents that will value the support and those that might benefit from learning more about the impact of baby loss on parents. So, before we talk about The Legacy of [00:02:00] Leo, Baby Loss Hour and more, could you share a little more about yourself, Leo and your journey to this point?

Yeah, absolutely. So my name’s Jess. I’m sort of late thirties, um, somehow, and I’ve been with, um, my wife since 2011. We had our civil partnership. We’ve since converted that into marriage and we met at school and very, very quickly after we got married, we started some fertility treatment. 

Um, and, and I think at that point we were probably very innocently naïve about what that process would involve, regardless of loss itself, but just the process of fertility treatment and what that’s like in the rollercoaster. But in 2015 I did fall pregnant with Leo and that pregnancy was relatively fine, um, up until it [00:03:00] wasn’t really, and so he died when I was 37 plus 1. I don’t know, I’ve always found that sort of quite a poetic one day after term, um, and after that, I don’t know, I just sort of started writing, and I’ve continued to write, and I’ve found doing so a really helpful catharsis, an opportunity to meet other people and connect with other people, and it’s really changed what that looks like over the years, so coming up nine years now, somehow, and it’s sort of changed what it looks like, but also changed sort of how I’ve, um, benefited from it, or, you know, struggled with it and all of those sort of different wonderful things that is sort of navigating grief and loss and bereavement and all of those things, I suppose.

So yeah, that’s kind of led us here, I suppose. 

So when you lost Leo, where did you find support, [00:04:00] or didn’t you? 

I mean, instantly, that sort of instant support, we, you know, we did have, um, a really good team at the hospital, and they, you know, obviously signposted us to SANDS, um, so that was, our first look in, I suppose, into this world.

And very sort of quickly, I suppose, I, I sort of turned to the internet. Um, we did, I can’t think at what point, but we did go to a support group or two for SANDS, um, in our local area. But it really was the internet where I found the most amount of support that resonated. We also read a lot. Um, so there were some books, on Amazon that I found and read and absorbed all of them, obviously at home on maternity leave without a baby, just sort of just absorbing everything, I suppose, to sort of feel less alone.

And understand what this all was, I think it was probably the week or the [00:05:00] week after he died, um, Professor Alexander Heasel was on the news, and they were talking about a Lancet report into stillbirth. Um, and he was obviously there representing Tommy’s. And I had never heard of Tommy’s. I’d never really engaged.

I didn’t know anybody that I knew people that had had miscarriage and recurrent miscarriage, but not stillbirth or a later loss in this way. So that was a real light bulb, I think at that point, and a feeling of hope because, and I think it, um, probably sparked something in me in terms of what I’m comforted in, in terms of the need for progress.

Like, it wasn’t so much, yes, I’ve found a huge amount of comfort from other people talking about their experiences, but also in equal part, I find comfort from knowing that there’s people doing something about this. And that’s what that [00:06:00] gave me, gave me this sort of like look in also to actually, there’s people that are just not sat down going, ‘Oh yeah, baby You know, fine. We’ll just carry on with this, um, pathway in the world to loads of people. That’s, that’s fine.’ Um, I needed that. I needed to see that action, that passion, that determination to change. Um, so those are the sort of the two areas where I sort of found support and I suppose have enabled me to sort of, you know, continue to channel something that I felt into something else that was a little bit more active, I suppose.

So then setting up The Legacy of Leo blog, I mean, you’ve mentioned about writing, but what really compelled you to do that? 

Honestly, I don’t think there was an active decision at any point. Um, I started writing in my Pages app on my phone when I couldn’t sleep at night. And I never, I wasn’t a journalist or anything like that. I’d never really written before, not in that sort of sense. I just need, I just had thoughts in my head I needed to [00:07:00] get them down. Um, so I just wrote, um, and they weren’t any well written pieces. They were just words. Um, and it’s just what, whatever was in my head, I just, I just put out. And in it, that, I suppose, gives you a sense of giving away those thoughts.

Um, you kind of got rid of the mean words through them. And then because I’d started to explore online, I’d seen some of the blogs. So I just started doing the same on, on WordPress. I think I just made a WordPress account or an Instagram account. I’m not sure what came first, but it was private. It was just for me initially.

And then I just started to get brave of putting it out in the world and very much motivated by a kind of ‘one in one out’ approach, like, I sort of discovered things where other people had supported me, so I was sort of like, well, I want to give back into the world, I just want to throw something else out there that other people might find at some point. Um, and if one person finds it and it helps them, great, because I am that one person that has been helped by other [00:08:00] people. 

And there was two things, really, that, um, in those early days that really stood out. One was that a blog about somebody’s baby’s funeral, because that’s what I was really struggling with at the time, was what, what can this look like? What does this look like? That stereotypical image of a funeral that you have in your mind that’s portrayed in, in movies didn’t relate to the experience of just having a baby and not becoming a parent. Those two things couldn’t sit together. So finding somebody else’s account of what their their funeral for their child looked like really, really helped, and which is why I wrote, um, about Leo’s funeral. 

And also, um, A blog by Richard Boyd, which is ‘a shoebox full of memories’ about his twins, and just some of the things that he wrote, and, you know, that we were reading at 1am in the morning to try and [00:09:00] make sense of what the hell’s going on in our lives, really in the early days, I mean, early weeks. I remember when, I think I’d woken up in the night to, to share a little something, I just remember talking about it in the night, and it, there was just words written in there that matched my thoughts, and, that was a real eye opener. So I think those two things probably really compelled me to do the same, but not in any organized fashion.

Like I think social media these days, you know, eight years is a long time in social media. It’s really changed. But back then there was no structure to these things that it was literally just people opening Instagram and just saying what was in their head. With whatever picture was closest in their camera, or that they’d taken that day. There was no gloss involved. There, you know, there was no perfection.

It was literally just writing, and [00:10:00] through that came a lot of validation, came a lot of connection, came a lot of friends, really. And I think we kind of hit, that online sharing within this community, probably for us at the perfect moment for what we needed. And I’m not sure I would have had the same experience today, but that’s, I probably would have, I suppose. I’ve got no, I’ve got no, um, test to, to really know, but it feels a lot harder to find things these days. That’s what I mean. Yeah. Other people’s stories and just connecting, it just, It showed me that I could release, I could be validated, I could be, those thoughts, no matter how dark, could be accepted. And other people then learned and understood what we were going through, and it’s given us that platform to be able to express ourselves in a way that I don’t necessarily do face to face with, with many people. 

So from there then, how has it developed? 

Yeah, I suppose, I suppose that sort of structure kind [00:11:00] of did start to come in, um, wanting to sort of do something a little bit more active. And I think in those early days, and when I say early days, I mean like 2, 3, 4 years. Um, ’cause they are early days. Um, I met grief with creating some, um, so. Sort of my working background is more sort of in marketing. Um, I like creating things, concepts, whatever you want to call them. And if I was having a bad day or a really bad run, then I would do something. And that something might have been fundraising, creating a blog series.

And I connected a lot with people on Twitter as well. Like, Twitter was a really nice space back then. And it was kind of like a different community. There was a lot of cross over. But at the same [00:12:00] time, it was a real level of a platform. You could connect with people working a lot more in the field than you could in other spaces.

And that, again, really related to my desire for action and change, as well as connection. And that’s sort of where Baby Loss Hour came from. I think it was, uh, there was a lot of, um, ‘hashtag’ hours. So if people haven’t used Twitter, uh, much, I don’t know how much it happens these days, but there was a lot of hashtag hours of all sorts of different topics happening. And, uh, Rosie was really running PND hour, and I saw that and that was really inspirational, and there was lots of other, you know, chat groups that were happening. 

So we just sort of decided to do Baby Loss Hour. And it, I don’t really remember the early days, it just started. We just, we just went, and that’s the beauty, I think, of the internet, and also not being an organisation, I am just a person. You can just do things. So we just did it and there was a good little group of us to begin with. [00:13:00] And it was really lovely in that it brought in different people. And that’s what I really liked is it, it was a really good platform. Still is a really good platform for sharing lived experience, but enabling people who work and support the bereaved to learn from that and to get involved in the conversation and to connect people up. That’s what I loved. Absolutely loved that. And it just snowballed as far as these people just really took it. And like, I could have easily walked up and put a hashtag out there every Tuesday, but, and nothing would have happened. It really is that, you know, people that came along and trusted in it and believed in it and signposted in it, that enabled it to continue to grow.

And we ran that for a good, good few years. Um, every Tuesday, and that turned into live events, turned into some virtual events, really, really successful, and then it sort of stalled, it was absolutely fine, and these things, sometimes you’ve just got to, um, not for a little while, and I have recently brought it back, and [00:14:00] it’s trying to find its place and my place with it with on Instagram. So it’s a little bit different, but I’ve loved how it’s enabled people to connect. And I, I know that’s happened. And again, when we talk about how hard it is to find people that you want to connect with, I think it’s nice to create a space where you could, you could find people, just by a few little interactions. That’s it. It’s simply following a hashtag that brings you into a world of people who are also part of that group. 

I think for those people who are listening, by PND, we mean postnatal depression. 

Yeah, sorry. So that was, um, yeah. PND hour was something that I think was running probably for about a year or so before Baby Loss Hour, but I saw people connect and how that built a sense of community and that was a real sort of inspiration.

We were doing anyway, we were already connecting, so it just enabled people to come together at the same time and place. And we’ve done it always around topics and sort of questions. [00:15:00] Very sort of Uh, inclusive and welcoming. That’s what always aspired to be. Um, and what I’ve enjoyed doing is inviting charities and different organizations to come and host, um, and talk about different topics, and that’s been really, um, powerful sometimes depending on the topics that we’ve, we’ve got, um, in how it’s enabled people to quite easily navigate some of the topics.

Brilliant. So that runs on Tuesday evenings? 

So Tuesday 8 o’clock, we’re on Instagram now. Um, so not every month, but we’re on a break at the moment. We’ll come back for September and October and then we’ll have a break over the festive season. Um, so it’ll come up to Leo’s anniversary and I’m just trying to work out the best cadence in all of these things. Um, so, but yeah, it’s on my Instagram profile, it’s always signposted there, so you can come and find out the schedule and who’s taking part. 

Fantastic, thank you. One of the other things that I know that you’ve set up, and I’d like to ask how that’s going, [00:16:00] is the LGBT bereaved parents Facebook group.

Yeah, so that’s just sort of one part of talking about this as a topic. So it’s a, as a lesbian who’s child has died, I’ve gone through stillbirth, I found it in the early days really hard to find other queer, gay, LGBT people that have also experienced loss. And I think there’s many, many layers. Um, and in the early days, I don’t think the support services were sort of set up to offer tailored support for people of all sorts of different communities.

And that is definitely improving and has improved over time. And I got a real sense, at that point, there wasn’t really anything that people could be signposted to. So, initially, we just, I just did a blog series again. One of those things, you’re having a bad day, so I’m like, oh, I’ll just do this. So, we, you know, I put a call out and we gathered, I think we’ve got sort of ten different people’s stories from across the world and across the [00:17:00] spectrum of loss and the LGBT community. And that is something that’s still accessible on my website. 

I’m really keen that people can find as many stories as possible. And I try and capture things that I’ve seen on the internet. Over the years I’ve kind of just got like a resource page where I’ve tried to link as much as possible and really encourage people to let me know if they spot anything that I don’t and from that Facebook group it’s small and quiet, but it’s there, and I think that’s really important for people to just know that there’s a range of options available for them.

We are all different, we all grieve in different ways, we all need support in different ways, and we all access information differently. And I think it’s just really important that if somebody is looking for something, that they find it. And it may not even be what they need, but just sometimes knowing it’s there is as powerful as that. [00:18:00] And as a community, I think there’s so many layers that can interweave with our grief. You’ve got donor conception, you’ve got fertility treatment, you might have known donors, you’ve got different identities, different parenting, family setups, as well as different forms of loss. You know, it’s a whole multitude of layers, um, that you’re going to alongside, you know, the layers of human experience anyway.

And it’s just really important that people know that they’re not alone and that there might be other things there and that they feel safe, um, to express who they are and what that looks like. Yeah, uh, so it’s something I’m really passionate about and I hope other people can recognize that even if you don’t need tailored support, there are people out there who do and we’re all different and that’s the diversity of options is something that’s really important.

Excellent. Thank you. So, what’s, what’s next for you then, Jess, or where are your [00:19:00] passions taking you now? 

Yeah, I think for me, I stopped actively doing stuff for a little while, and this year has seen me start to actively do stuff again. And for me, at the moment, it’s really about just finding what that looks like and what the balance is.

You know, I do this, it’s in my spare time and, you know, life is going on around and it’s. It’s interesting, I don’t feel as compelled with a need to do something in terms of in response to my grief and like on a day to day basis, but also I enjoy the connection, the ability to have space to talk about Leo and everything that’s come from his death.

But it is trying to find, strike that balance, say, at the moment. It’s finding a balance of what Baby Loss Hour looks like and working out how that works and what people would like. But also [00:20:00] doing little bits here or there alongside some of the charities to develop some of their sort of more inclusive support options.

And sort of focus groups, I quite enjoy taking that and I know it’s important that LGBT communities represented, so I’d really encourage anybody, if you, if you feel you are a voice of many voices from a community, whatever that community is, to take up the opportunity to be involved in focus groups or research, so that we can really make sure, you know, support offered to bereaved families continues to progress. Yeah, so doing that is always, always something that I think I will take part in, no matter what else I’m doing. 

Also, so one thing that um, I’ve recently shared is advent to remember, which is something that we started really in the early days, in the first Christmas after Lee died. He died in January. And I remember we were sat in a big garden or somewhere in July, just you know, in July going, how the hell are we [00:21:00] gonna do Christmas? Like, people have probably started, you know, they do, don’t they, in July going, ‘Oh, what are we going to do for Christmas? It’s six months away, why aren’t we planning Christmas?’ But that year in particular, we were like, Oh, oh, how? Like, Leo died two weeks into January. Like, Christmas is a really poorly timed thing for us now.

So again, in response to my grief, I did a thing, which was Advent of Leo. We decided to, you know, through Christmas, we would do something every day for him. And it wasn’t anything strenuous, necessarily. We donated to a food bank, we donated to some charities, we bought an Aching Arms bear, we lit candles, we hung decorations on the tree for him, we decorated his grave.

We did something every day for him, to include and remember him, with the hope that it would, make Christmas and everything [00:22:00] that comes with it that little bit easier and that we could learn how to parent him despite the fact that he wasn’t there and hadn’t been there. And I think that really showed us different things that we could do to parent.

And that Christmas, we, we didn’t see anyone on Christmas. We just, we just stayed at home. We, we went to the grave. We, we just, you know, completely hibernated and it’s taken us, I think it’s only been like the last probably two Christmases that we’ve gone sort of, to an extent, um, on Christmas. But the following year, I opened it up to other people to do the same, if they wanted to, obviously.

Everyone’s different, but that was Advent to Remember. And we continue to do that, and invite other people to do their own Advent for whoever they’re missing, there are no rules. This is to help, and not hinder you. And people message me, and then I was like, I can’t. I can’t do it every day, and I’m like, I’m not a rule book for how people parent in grief.

I’m just [00:23:00] offering an idea for how you may want to parent in grief. And this is something that’s worked for us, and it may work for you, and you can do it in whichever way you want to for you and your child. Yeah, so we’re going into the eighth year this December and I really hope people feel it’s helpful and continue or do it for the first time, depending on obviously where they are. Just because I know you go into a season like this and they’re all like, it’s messy and horrible. And I should imagine people have times in the year that they recognise that based on their own sort of cultural, family, traditions, birthdays, things like that, it gets messy. This is just an option in amongst many options, but something that I’ve always really enjoyed doing and celebrating.

Um, I think that’s generally where I’m at. I’ve toyed and have explored this year writing a book and that requires a hell of a lot of energy and a lot of vulnerability to putting yourself out there [00:24:00] and it’s something that I knew would be hard. I think, yeah, you need a lot of emotional resilience, so it’s It’s, you know, it’s one of those time and place things, I think, and it’s not so much the writing, I very much enjoy the writing, but it’s everything that goes along with it, so I’m just trying to work out how I best want to do that for the benefit of what the book would serve, but also the benefit of me at the same time, because I found doing a lot of this work, and this is probably why I stepped back a little while ago, but you put so much in with the view of helping yourself and other people, and then you don’t get much back.

And what I mean by that is not in terms of reward or recognition or, you know, there’s no pay, let’s face it. Um, it’s not that, you know, it’s not like a working situation. What you want back is your child and that’s never going to happen. So you’re doing all of this stuff and this energy and they never really know at [00:25:00] what is the desired outcome.

And how do I, therefore, if I don’t know what that is, how do I get there? How do I feel like it’s working? And that’s sort of clunky words, but you keep going and doing something. But I think in many things in life, you continue to do something in the pursuit of an outcome. But there isn’t an outcome here that is going to feel like I’ve completed or succeeded because the, ultimately, the outcome is Leo, but he’s not, that’s not possible. So I think I’ve, I’ve really struggled with that through the years to know, and that, you know, this comes from, from me in terms of me as a person, I’m driven by achieving. So it’s, it’s a real tussle to do things to an extent that I feel like the balance of helping me and [00:26:00] other people is right, if that makes sense, and feels comfortable and safe and sustainable. And in the early days, I was very much driven, so grief was more intense, so the payoffs were different. Whereas I think in the later days, it’s just a different balance of it all. And I’m trying to work that out, I think, as well.

It’s a very long winded answer. 

And that’s, that’s absolutely fine. And I think one of the things that we spoke about in a another podcast that I’ve recorded for series two is the idea of ‘phase two’. So there’s year one, which is discrete and horrible in and of itself. And then there’s phase two. And during phase two, that’s, that’s where we change our relationship eventually with our grief. And so we come to a point where ideally, where we feel that we can kind of walk alongside our grief much more comfortably on a day to day basis. And at that point, some of the things that perhaps have been helping us to manage our grief or to be [00:27:00] in contact with our emotions or our memories, we perhaps don’t need them in quite the same way.

And I think it’s, it’s a constant re evaluation of, of what we’re doing, what we, why we’re doing it, and all the rest of it that you’re probably grappling with, um, at the moment. 

Yeah. Definitely, and I, I can really recognize that, and it’s the intensity of the grief and the ability to put it aside that I think is the real shift. You can trundle on for weeks and months and think, oh, I’m fine. And then you realise, no, you’re probably not. You just kind of now have the ability to be fine. That doesn’t mean you are fine. 

No, but it means, like you say, you, you can accept the good days, you, you recognise the bad days, and you can manage the pair of them in one way or another, sometimes better than others, but you know that you’re going to survive and carry on, and I think that’s a really kind of healthy place to, to kind of get to if you can, kind of, given that you have been on quite the journey, and I’m not too sure [00:28:00] that journey is the right word, but, you know, you’ve been from A to B. 

And what are the key messages that you would really like to share with listeners today?

The main thing is being kind to yourself and that that offer doesn’t expire. I think in the very early days, we were so kind to ourselves, to each other. We were really delicate around how we did things. And as life goes on, you sort of forget to be that kind. It is just around really learning. What you need, not what other people think you need, but what you need, and if it works for you, then do it.

We had this rule, and it’s a little bit random, but my rule in the early days was whatever happens, we don’t get addicted to crack. 

That’s a good rule!

I appreciate that, that is a very high bar! There’s a lot that we can, that could be happening up until that point that’s not necessarily [00:29:00] wise. But I was like, we, you know, this is, we just need to keep hold of, of what’s happening here. And we just need to learn what that looks like and ease ourselves in and go gently.

And there’s things along the way that we do that I think represent that in, you know, we don’t, we don’t overthink the small stuff too much. We opt for ease where we can, where we’re lucky to be able to afford that ease, we pay for that ease. We just try, and this is, you know, you’re never going to achieve this completely, but we just try to give ourselves the least amount of stress we can in any given situation.

And I think sometimes you recognise that you’re no longer doing that, but actually really sense the purpose. So, I think that would be my message, is that if there’s an easier route, [00:30:00] and you can take it, and it’s safe, take it. Why make things harder for yourselves? And I think, for other people around you, and particularly employers, something I talk about, I get quite passionate about workplace, bereavement support.

If you can make something easier for somebody, and you have a choice in that situation, then do that. Like, why make it harder for somebody? People are already going through so much. So, if there’s something that you can do that helps, then help. In a roundabout way, generally kindness, just good human kindness, um, goes a long, long way.

And absolutely for yourself, I think is really important. And, and just to know that you, you can parent a child that isn’t here. You are still a parent even though they aren’t here. And as the years go by it may feel like it is only [00:31:00] you or those closest to you actively doing things for that child, but you still have that ability to do that. You can set the tone. 

Thank you. That’s great. So, are there particular things that come up time and again on Baby Loss Hour that you find that people ask more frequently or that they want to discuss more frequently? 

Yeah, I think it’s not, it’s navigating the world again, and that’s a huge topic in itself. It’s knowing how best to engage at work with friends, with family, maintaining relationships, knowing how to be around pregnancy. How do we, you know, whether that’s our own, again, or other people’s, it’s that it’s, you know, and especially this kind of contradicts with what I said just now, there’s a risk when we’re being kind to ourselves, that we isolate ourselves, because actually being around other people is impossible. It’s really, really hard, [00:32:00] particularly big social things, especially in the early days. So yeah, I think that’s the main thing that I find sort of probably transcends most things. People don’t necessarily validate, I think, in themselves, like in a, you know, sort of wider society piece. They do validate that pregnancy loss and baby loss is awful, but it also terrifies them, so they don’t really think too deep about it. And in doing so, I think sometimes forget how devastating and how physical an experience that is, how traumatic an experience that can be, and also how unknown it is in terms of the language we use around it.

And so you read at the beginning of the piece, and it’s interesting because I know they’re my words, about Leo being born sleeping. And that was how I described it in the early days. And it’s not necessarily how I would [00:33:00] describe it now. But I think that’s because in society, we’ve got a real unease around, around this. And it infiltrates then our ability to engage with other people, particularly other people that haven’t got experience. So, um, I find it very easy to talk to people that have had baby loss. Socializing outside of that, I find it’s like elephant in the room situation all the time. So, and I think that’s something that most of us can relate to is just that sort of awkwardness, I suppose.

You mentioned about being part of focus groups with different organisations. Is that something that people can easily get involved in? You know, who’s, who’s kind of running these focus groups and what are they focusing on? 

If you’re following the main charities, uh, or even the smaller ones, um, SANDS, Miscarriage Association, Tommy’s, ARC, Aching [00:34:00] Arms, Say Goodbye, all sorts, then they’ll either put out requests for their own focus groups, or there’s lots of research that actually is happening, and they will share those opportunities to get involved.

So we’ve got kind of two conversations here that’s happening. You’ve got a conversation with other bereaved parents, which is very validating, very important, and we’re talking about our shared experience. And then when you sort of venture into a focus group, you’re having a conversation of this is what your experience is, but this is also I should think about that experience and I think that’s quite different sometimes and, and depending on which way people are wired and what, what it is that they like to engage their brain in, that can be really, really useful because you can have a sort of objective conversation about your experiences.

Um, and I quite enjoy that. I’m quite a strategic thinker. I quite like thinking bigger [00:35:00] picture and seeing opportunities. So that’s something that I’ve enjoyed getting involved in, but equally sometimes just knowing that your experiences count and they can influence something or help the next person going through a service or, um, or just wider research and understanding, I think is really important, particularly when we’ve got a nuance to our experience. I think that’s really useful, whether it’s poor experience, whether it’s type of loss or the community that you’re from. 

Do you feel that there are actual systemic changes going on in these organisations? 

Yeah, I think Leo died in 2016, which was 2016, 2017, quite a huge, I won’t say turning point, um, in some of the conversations that was happening within baby loss at a systemic, sort of, wider level. We’ve had the National Bereavement Care Pathway, which has led a lot of change. We’ve had the Saving Babies [00:36:00] Lives papers and setting up different investigation bureaus. And we’ve also had lots of sort of maternity investigation inquiries, Morecambe, um, for example, recently in Nottingham. I’m not necessarily saying we’re at the end of all of these conversations, but at all, but over the course of sort of eight, nine years, I’ve definitely seen that we’re having conversations at all levels.

Um, the APPG on Baby loss, something that I’ve been involved in to the point of like listening to over the years. APPG is all party parliamentary group. for Baby loss. You can see that things are happening, and it’s joined up and that’s what I’ve really enjoyed and I’m sure there’s areas where it isn’t. But there does, did seem to be a lot of collaboration with the organisations.

There’s the Alliance for the Baby Loss Charities which, um, you know, make the Baby Loss Awareness Week happen in the way that it does and things. So there [00:37:00] is still so much to do. When you look deeper into the baby loss progress over the years, it really has been parents that have led that change and inspired that change and put pressure on that change and that is still happening today in all its different forms.

You know, some of the, the awful stories we hear that come out in terms of people’s care that has been led by parents pushing and pushing and pushing and pushing and pushing. Many, many, many of the charities you know, they originate in sort of lived experience, founder experiences, and people are pushing and pushing it at individual level in terms of, you know, recognising some of the opportunities that that were missed in their own experiences, but also recognising, you know, the wider opportunities on a more systemic level.

So those, I think they are really [00:38:00] good organisations and the different sort of researchers and things out there in making sure lived experience is really leading the change. So I think everybody’s got the ability to get involved in that. There has been progress, but my God, there’s so much more, um, so much more progress to happen in terms of prevention, but also in support after loss.

Thank you. That’s really informative. I’ll make sure that we put links to all the various organisations, research, everything we can think of, so that anyone who wants to look into any of this further, then we’ll make sure that’s all available on the episode listing in the webpages later. 

Jess, what’s family life like now for you?

We’re in a good place. I think, you know, as with everything, there are swings and roundabouts, huge ups and downs in how life is going, isn’t there? But we, I think we’ve gone through so much that it, yeah, it’s taught us a lot about how we approach those things, I [00:39:00] suppose. 

Fantastic. Well, I’m just hopeful that everything is, is generally happy. And I know that Leo is part of everything that you do, but hopefully you do those things with a little bit of peace in your heart. 

Yeah, definitely. Yeah, I think we do. And I think, I think the hardest challenge we have in respect to that currently is watching Eli, so our seven-year-old, navigate that. I think that’s really quite a unique experience for them, amongst their peer group, to be trying to understand a very genuine grief, you know, from a child that they, you know, never knew other than being their dead baby brother, who’s bigger than them, but is a baby, and it’s very confusing, I think, for them, and it’s just trying to navigate that, and that is the, not the, you know, knife in the heart twist, when you’re least expecting it, because, you know, You know, they just come out with stuff, don’t they, and, and questions and thoughts and some real genuine [00:40:00] emotions.

And I think that’s, that is something we navigate alongside him and his face of, yeah, uncharted territory and sort of knowing. There’s again, there’s some, you know, great resources out there, just sort of help and, and some books for those that want to. But I think we just kind of just follow his lead. But yeah, I think that’s probably the main newness in terms of our grief experience, yeah.

Jess, one of the things that we always ask people on the podcast is for a sort of moment of gratitude for something quite lighthearted, because the topics that we touch on are quite broad, intense and difficult. So is there something that you’re grateful for? 

I’m really appreciative not everybody can access this. One of the things I’m very grateful for is we do invest in a cleaner, which goes back to my make life easier for yourself if you can. And she is a wonderful human being. And she helps keep my sanity. She only works term time. So at the moment in the state of recording this [00:41:00] in the midst of summer holidays, I really, really miss her.

Oh bless, she’ll be back soon. 

She, I just don’t do, I just can’t keep the house as nice as she helps us keep it. And she is, and she is a light in my week. She is wonderful. Um, bless her. But yeah, I really miss her during the summer holidays. But that is like, I am fully aware of my privilege of being able to invest in that. But it, it is, it is. It’s like one of those important things, it’s like I don’t have a gym membership, uh, for my mental health, but yeah, other things for me that I’m invested in. 

Like you say, it’s whatever works for you to kind of keep you getting through, so that’s wonderful. Thank you for sharing that, Jess.

That was my conversation with Jess Clasby-Monk. As we said, you’ll find all the information that you need on the episode listing and more resources on the webpage. Please do rate, comment, and share our [00:42:00] podcast so that we can reach everyone who might benefit. And for those of you who’ve experienced baby loss, we’re sending you extra love this week.

This episode is dedicated to Leo.