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In Episode 6 of Footprints on our Hearts, I talk to Steph Wild about her daughter, Bea, who had a rare brain condition. Steph and her partner had to make the terrible decision to go through a compassionate induction (also known as medical termination). We also talk about Steph’s experience of working as a midwife both before and after Bea died.

Introduction

Even within the baby loss community, termination for medical reasons feels like a bit of a taboo subject, so I’m very grateful to Steph for discussing her experience so openly, in particular, how she fought to ensure that her daughter passed away as peacefully as possible.

Steph Wild is a midwife and the chair and founder of Beyond Bea, a charity she set up in memory of her daughter to provide free training to help healthcare professionals better support bereaved parents.

In the interview we talk about:

• Why Steph decided to become a midwife and her experience of baby loss leading up to her pregnancy (3:55)
• Her pregnancy with Bea, finding out that Bea had a very rare brain condition and having to make an impossible decision (18:08)
• The impact of Bea’s loss being before the 24 week date when she would have been registered as stillborn (39:50)
• The challenges of going back to working as a midwife after losing your child (43:55)
• Why she set up Beyond Bea and how the charity has grown over the past two years (55:20)

You can find out more about Beyond Bea, including the services they provide and how you can donate or volunteer at https://www.beyondbea.co.uk/. The charity is also on Facebook, Instagram and Twitter.

If you enjoy the podcast, I’d really appreciate it if you could leave a review on your podcast app. You can connect with me on Instagram (https://www.instagram.com/footprintsonourhearts/) and Twitter (https://twitter.com/skyesfootprints) or email alison@footprintsonourhearts.com.

Transcript

Please note, timings below are referenced from the start of the interview segment of the postcast, not the start of the podcast itself.

Alison Ingleby 0:00
Today I’m joined on the podcast by Steph Wild who is the founder of the charity Beyond Bea, which she set up in memory of her daughter. Welcome to the podcast, Steph.

Steph Wild 0:09
Hi, thank you so much for having me.

Alison Ingleby 0:11
Oh, it’s a pleasure. And you’re in quite a unique position in terms of guests on the show, as you’re both a midwife and a bereaved parent so you have a foot in both camps. And I wanted to start off by talking a bit about when and why you decided to become a midwife.

Steph Wild 0:28
So I always aimed to work in something that would help people, that was always my plan. I didn’t know exactly where I would go with that initially. So I was 17, looking at my A Levels, and I decided I didn’t want to be a nurse because I wanted to be able to have a bit more control over the plans I made and to make my own decisions a little bit more. And so I thought, being a midwife sounds great. And to be quite honest, I was always the child who hid behind the sofa when Casualty was on so it probably wasn’t the best decision at 17. But that soon changed once I applied, and I actually got in the first time of applying.

Alison Ingleby 1:18
Fantastic. And had you had much experience with baby loss through your job as a midwife before your own more personal experience?

Steph Wild 1:31
So, when I was a student, I gained a particular interest in it. And mostly that was because of experiences I’d had. When working on a labour ward, I had a particular experience that probably pushed me more than anything. There was a family who had come in and their baby had suddenly been stillborn. And the family decided not to see their baby, never to meet the baby, name the baby, know about the gender. And I found that unusual. I was 18 and I couldn’t comprehend their decision at the time, so I wanted to better understand it. And so I asked my mentor quite a few questions. And I noticed in her notes that she was of a certain religion and the mentor turn around to me and says, “It doesn’t matter. That’…s she’s not going to see her baby”. And for me, that was really important because I wanted to understand why this family felt that way. So, um, I actually thought I’m going to make myself feel comfortable to question decisions that people make and also be able to do that in a supportive way. And so I looked into trying to do more, so I actually started to support a baby loss support group that was based in the hospital and along with the one of the mentors that I worked with – a completely different mentor than that one. And so for years, I actually supported that support group and learned about so many other people’s experiences through that. And also saw that they weren’t always great. And then once I qualified, I planned to go to a different hospital. I wanted to go to a bigger hospital that had the likelihood of a specialist bereavement role because that’s what I wanted to pursue – to do. So I actually made sure that I did anything possible to be able to get that role. And so whilst I was a student, and once I qualified, if there was any kind of training available, I went on it. If I could work an extra shift to pay for it. So I literally sought out anything I could, because I wanted to be someone who could make a difference to the families where ,just because someone didn’t want to ask that question because they felt uncomfortable, actually that could have changed their care.

Alison Ingleby 4:04
So are you a specialist bereavement midwife or a midwife with a particular interest in supporting bereavement care?

Steph Wild 4:13
So I never got to the point of being a specialist bereavement midwife, I just always had a special interest and probably around the time Bea died was probably around now, I would be hoping that I would be in that role, but obviously, the plan’s changed a little bit now.

Alison Ingleby 4:31
Yeah, for sure. And I think just before we go on, can we come back to I guess, your experience in terms of what you’ve seen and people’s and family’s reactions to baby loss because I found that really interesting what you said about that family who didn’t want to see their child and you know, that might have been for cultural reasons, and often there is perhaps old fashioned view or a view that some people have, obviously because it used to be a taboo. And it used to be the case that, you know, you weren’t given the option to see your child that perhaps in some sectors of community or in some families that’s carried on through. So I guess what’s the range of experiences you’ve seen in terms of parents reaction to whether they want to see their child or spend time with their child and that kind of whole process.

Steph Wild 5:30
I think on the whole, the vast majority of families have chosen to see the baby and spend time with a baby. But it hasn’t necessarily been the decision is made first of all, and sometimes that’s required some discussion or something else to kind of break that barrier a little bit. But I think predominantly the main thing, and what they all have in common is not necessarily a religion or culture, it’s just because they’re scared, and they don’t know what the baby’s going to look like, or how the baby will feel in their arms, or that the baby’s not going to come out with five heads and look like an alien, because that’s what dead babies look like. It’s actually just going to look like the baby you had in your mind, potentially a bit smaller than you’d imagine, maybe pinker skin. And so just by opening up those conversations and saying, “What is it that’s worrying you? Is there a reason you didn’t want to see your baby? Is there something that particularly worried you?”. And sometimes just by asking that question, you’ve totally changed that perception. And then, before you know it, they’ve spent three days with the baby and they’ve done all the memory making and the photos around the house or because you asked that one question.

Alison Ingleby 6:48
I think that’s a really good point. And I can, you know, I can definitely relate to that in terms of my own experience. And I think perhaps the other thing which I kind of had on the back of my mind was was the question well, what am I supposed to do? Like, what’s right and what’s wrong in this situation? And, you know, I don’t want to put people out or inconvenience people, and I’m not really sure. And I think obviously, when you know, when you hear your baby’s dead, and then you have to give birth to them, and you have to go through that whole process, you’re, you’re still in shock a lot at that point. So I think there is definitely a case of you don’t know what you do want, as well as that fear of the unknown. And perhaps, I guess, what is available? What are you allowed to do? I mean, that’s a silly question. And you know, the me who I am today goes, Well, that’s stupid. Just ask for whatever you want, you know, you’ve got a right to have this, you’ve got the right to have that. But I’m very much – I don’t break rules. And you know, I like to know what what are the guidelines and what am I supposed to do and what am I allowed to do and I guess, what’s appropriate, what’s not appropriate. So that was something that I definitely struggled with in terms of, I guess, my sort of decision making and things.

Steph Wild 8:02
And I think it doesn’t necessarily lend itself to our comfort zone. So we do want someone to go, right, these are the things you can have and you can choose. But equally, we think that when your baby’s born alive, you wouldn’t ask someone if you can pick the baby up. But when they’ve died, you’ve got to ask permission. And that was actually a theme of our conference last year in 2019. It was called Am I aAlowed To, and it was about making sure that we emphasise how important choice was because if you don’t give people the choice, how do they know they’ve got one? And so we need to make sure that we’re advocating and empowering families to know that they can make a decision and they’ve got a choice and it’s this, that or the other, rather than saying, This is what happens. And this is what we’re going to do.

Alison Ingleby 8:55
Yeah, and certainly and one of the things we found which we did feed back to our hospital was that once we found out that Skye had died, and you know, we got sent away for a couple of days after taking the pill to come back in, we didn’t get told anything about what was available at the hospital and what they would do. And I, you know, I went and hit Google because that’s what I do. And I found a load of useful stuff on the Tommy’s website, but obviously, it’s different with different hospitals. So you know, in terms of that sort of memory making piece or what they had, and I know, for example, a friend of mine, they had photographers come around and take photographs of them. And that wasn’t something that was offered at our hospital or at least not at that time that we were aware of. So I think there’s there’s a lot of different things out there and different hospitals do it in different ways. And I guess, then, I don’t know perhaps if I’d known what was going to happen. I don’t know. It’s easy in hindsight isn’t it. You’d have done things differently but it’s easy to say that whereas when you’re when you’re in the moment, you’re you’re in shock and you’re just taking it an hour at a time.

Steph Wild 10:02
I’m quite glad you brought that up really, because that’s something that even I speak about as someone who’s a midwife. But as my partner wasn’t a midwife, and was actually a clinical person, but not necessarily someone who had any idea about baby loss, he had no idea what would happen, how long it would take and all the processes. He had absolutely no idea. And no one prepared him and no one sat down and said, this is going to happen next. This is how long it’s going to take. And I felt that I lacked the application of that, because everyone saw, Oh, you’re the midwife. You’re not the mom. And actually, my partner was the dad who knew none of this. So I had to sit down and talk to him like it was not happening to me. And that shouldn’t have happened. So off the back of that and seeing how exactly what you said, um, is the same for so many families. But equally as a health professional, I completely appreciate that it’s so hard to sit down in front of a family, and go right, so you can do this, this, this, this, this, this, this this, because you’d obviously look at us and be like, Whoa, you’re talking about far too much. And completely understandable because you already not processing most of the information to begin with. And so we’ve developed a resource – at the moment it’s still in development – that we’ve tried to make sure that as many people who want to be involved in it will be. It will be launched again on our social media to ask for any more input. And it’s currently called The Alternative Birth Bag and we don’t know whether we’re going to change that name yet. And it’s basically as it says on the tin with that, that it will give you ideas as an alternative birth bag of the things to bring. So bringing two of that teddy bear you bought rather than the one you bought. Sent someone out for it. Do you want to go on a shopping trip because you’ve got that in mind and that’s your focus. Do you want to contact a service like Remember My Baby who are volunteer photography service because just because your hospital as they offered, it doesn’t necessarily mean they won’t come in. So you could contact them. And just other little things that that made a difference to me. Having a lavender oil with me at the time was useful, because now that association of smell reminds me of my baby every time and it’s actually quite common smell so … It was also really good for instance, for your perenium because you’ve just pushed a baby out and it’s sore down there. And it also it helps you sleep. So it’s small things that make such a big difference but someone can’t always reel them all them things off at you but if you had that to take away and read and then had somewhere, so we’d link people to go to our website where we’ll put other things there too, that they can then go, I hadn’t thought of that, or, oh, I could do that, or I don’t want to do that but I will do that. And it just gives you that someone saying, you’ve got a choice and here you are you make it. But equally, if you don’t want to, we can help you.

Alison Ingleby 13:20
That sounds amazing, and a really useful resource and yeah, exactly what I would have needed because I think and again, obviously, it’s going to depend, I guess at what gestation you are, but you know, Skye was 26 weeks, she was relatively early. I hadn’t even thought about hospital bags or looked at anything like that. And I didn’t even know you know what happens during an induction because I hadn’t, you know, hadn’t even started thinking about giving birth. Yeah, it’s still months away. I wouldn’t have to think about that kind of stuff. And yeah, so one of the things that I was looking at was obviously what you taken to hospital but then all the lists you get are presuming you’re going into hospital to give birth to a living child, so it’s you know, you take, you know, baby grows and nappies and things and I honestly I didn’t even think well, I could still take a baby grow for her, like that didn’t that didn’t even cross my mind. I think we took a blanket, but the hospital ended up giving us a blanket and ended up dressing her in something which, I’m not sure was what I would have chosen to dress her in. But you know, I just wasn’t even thinking straight at that point. So yeah, I think that’s a really, really valuable resource that you’re developing. Okay, let’s move on to talk about Bea then and about your experience and how she inspired this amazing legacy. And how was your journey to get pregnant with her? How did your pregnancy go?

Steph Wild 14:49
So Bea was a surprise pregnancy and so very much not planned and I appreciate how lucky I am in a sense that I have been someone who’s got pregnant quickly and I never have taken that for granted really because you never know until you get to that point that that will happen. And really my pregnancy to most people probably wouldn’t be perceived as great. I had really bad hyperemesis so I was vomiting continuously and I actually lost 10 kilos in the first, like 12, 15 weeks.

Alison Ingleby 15:30
Oh my goodness, that is not supposed to happen.

Steph Wild 15:33
Yeah, no. So I actually worked still and was having injections whilst on shift just to stop me being sick because I don’t like being off work.

Alison Ingleby 15:44
Oh, my goodness. I mean, this dedication to your job and there’s taking it you know, to the extremes. Yeah.

Steph Wild 15:51
So, but overall, once kind of that it did subside after probably about 16 weeks and then I did really enjoy it. I absolutely loved being pregnant and everything about it. And so overall, really, my pregnancy was was lovely.

Alison Ingleby 16:09
And then at what point did you find out or get an inkling that that things weren’t going to plan.

Steph Wild 16:16
So we went for the 20 week scan. And we knew obviously all about what the scan was and why we were having it. And so we started to have the scan. And she very quickly worked out that we both were health professionals because of the things we were coming out with. So she was chatting away to us, carrying on with the scan, and got towards the end of the scan. And she said, and there’s a part of the brain that I can’t quite see. And it might be that the gestation is a little bit wrong, we might have got the dates a bit it out. It is only a small part. So it might just be that but equally, it might be because it’s not there. And so what I’d like to do is get another sonographer to come in and repeat the scan. So she did, she went ahead and the other sonographer came in and repeated the scam. And she had the same findings. So she said that she couldn’t see it either. So we were told that we’d been referred through to the foetal medicine unit, and that referral can take around a week. So she took us to another room outside into a basically a quiet room, which most of us know what one of those is, especially bereaved parents and got taken to one of those and 10 minutes later, she came back in with about 10 scan photos, because that makes up for the bad news. And then about half an hour later, a registrar who’s one of the like mid level doctors came in and said one of the consultants is going to scan you now. Which, there’s not many perks of working in the NHS, if I’m honest, but it was one of them. So, about another half an hour later, we would take him through to the foetal medicine unit. And he said, I’m going to repeat the whole scan, and obviously got to her head last. So he was scanning away and got to her head and he pressed on quite significantly more than I’ve noticed previously, and I just thought maybe that’s just a technique, I don’t know. And so we could see the scan in front of us in the screen. And he said, okay, I see where they were coming from, but there you go, there it is, there’s everything. And so he said, you can return to routine care and go back to whatever scans and things you were having as planned and wrote up the report. And then he turned around and said, if you would like t,o you can have a MRI scan for reassurance. And to this day, I still don’t know whether that was because I work there. So that’s a little extra offer because I was lucky to be in a facility that had that. But obviously not everyone gets that offer. Or whether it was because that’s a routine thing to do. I wasn’t really sure. And so the MRI scan wouldn’t be for two weeks because obviously MRI scans are few and far between anyway, and especially to have a foetal one done. And so we went on holiday for a week, came back off holiday. I obviously went on night shifts and couldn’t get the night shift off so I had to go for my MRI scan before my shift. And so we went for the scan and had everything done and they said the results will be back in two to three days. And so on the Friday and this was the third day, I’d finished my night shifts that morning, went to sleep and woke up and we plan to go to the local shopping centre. And then we were going to the house we were about to move into. We had measurements to do, sofas to buy, nursery to plan. And so we thought we’ll go and do the measurements, and then we can get that all in motion. And so we’ve just been to the shopping centre, we had baby clothes in the back of the car, and my phone starts to ring. And I’m in the passenger seat. So I answer the call and the midwife on the other end of the phone goes, I’m really sorry, but we weren’t expecting this. But your baby has a brain condition. And it’s called Schizencephaly. And we think that it may also be affecting the optic nerve. And the part of the brain that they’d not seen then had seen was called the cavum septum pellucidum and that actually wasn’t there. And she said … and I said, Okay, so what now? And she said, Well, we’ve made an appointment for you on Monday at 1030. So we’ll see you then. This was Friday at 2pm.

Alison Ingleby 21:13
And did you know the midwife then? Was this the hospital you worked at?

Steph Wild 21:18
So this was the hospital I worked at, but I hadn’t really had any, like, links with her. She knew who I was. And she knew I work there. And I can we not see anyone sooner? And she said, No, because there won’t be cover because it’s the weekend

Alison Ingleby 21:35
Or not even speak to a consultant? So you’ve basically just been told your baby has a part of their brain missing and you have to wait three days to find out more.

Steph Wild 21:45
Yeah. So I then had to put the phone down. My partner’s sat in the driving seat looking at me like … because he’s wondering what questions I’m asking and what does that mean? And I tell him. He then burst into tears, understandably. And so I say, “right get in the passenger seat”. So I walk around the car, get him out the driver’s seat. I start to drive, and then realise I can’t just drive home because I need to ring me estate agent because we’re about to go there. So I have to ring them to say, we’re not coming because there’s been an emergency, I’ll explain more, another time. And so head home, hit every red light, obviously, and, and get home and he rings the foetal medicine unit again, and asks for the whole report to be read out and starts writing it down. And he’s a doctor, so it’s just his thing to do. And so he wrote everything down. And he then started to research and that was his way of processing. And clearly, most people know you can’t fix the brain. It’s not something that we can do very much about and with the extent of how severe it was. And they also said that she had open-lip Schizencephaly. So it’s actually the rare version of it. And it affects one in 100,000 people. So it basically equated to her potentially never walking, talking, eating, drinking, communicating. And we didn’t ever know how severe those would be. But equally she’d have seizures all the time, numerous times a day, and potentially need stents put in into her brain. So obviously, numerous surgeries, numerous admissions, and just constantly at hospital having invasive procedures and not having the life you’ve ever planned for your baby to have. And never being able to tell her why this is happening. Why you’re being stabbed in the leg again, why, and don’t even know if she’d understand. And we knew just off the information, we knew that that’s not what we could do for her, and so, how we like, kind of like to word it and see that there are quite a few things that say it, but we only wanted her to know love, because you don’t want your baby to know pain. And if we could take that away, then why wouldn’t we? So we knew that going into that appointment on Monday what our plan would be and so, um obviously, that would basically be defined as medical termination. I much prefer the term compassionate induction for that because it’s compassionately done. She’s having the labour induced and I’m not terminating my baby because I don’t want to get rid of her. I want her. But I want her to have a good life too.

Alison Ingleby 24:47
So when you enter in on the Monday because of, I guess your medical understanding, you’re able to understand the terminology and and you know what it means. So I guess you’ve prepared yourself a bit. What did the consultant say to you when you went in on the Monday? Did they give you a choice? Did they give you a recommendation?

Steph Wild 25:07
So we arrived there. And the consultant who done that scan had said, I’m really really sorry, we obviously weren’t expecting this. And he almost was about to kind of say, so you’ve got some options, one of which was to bring in someone who was a neurosurgeon, for instance, and we were like, we know you can’t fix it. You can’t just put half a brain back in, unfortunately, so we kind of went No, thank you. And then we said, we already know what decision we’ve made. And to which there are a couple of options with medical termination. And at the time, I was 23 weeks exactly on that day. And he said to us, if that’s the decision we’ve made, that what would happen is that we would take the tablet, as you said, the tablet then stops your placenta functioning as normal so your body doesn’t think it’s pregnant and it prepares you for labour. Then you go home, usually for 24-48 hours, come back in, and then have a procedure called KCL, which I’ll explain in a moment, and then have an induction from there. So KCL is an injection that’s delivered directly under ultrasound and directly into the baby’s heart so that they they’re not born alive, essentially.

Alison Ingleby 26:48
And is, is that done to reduce any stresss? You know, I guess why did they do that as opposed to go through an induction process? Was that a choice? Or is that is that just something that happens in this situation?

Steph Wild 27:02
So most of the time, it’s a bit of a legal factor because basically if a baby’s born alive, their classed as a neonatal death if they’re born alive and die, but because obviously I was 23 weeks. it’s a very, it is a very grey area. Because 24 weeks is our actual viability limit in the UK, but we are now starting to see more and more babies being resuscitated at much earlier gestations – 23 weeks and sometimes even 22 weeks, and we actually turned around to him and said, I don’t want to have KCL because we wanted Bea to die with us not through the hands of somebody else, no better word for it. And the Royal College of Gynecologists, it’s a recommendation is that any baby born above 21+six weeks gestation, has the KCL procedure unless they die of the condition that they would be being terminated for us as it were but very early. So basically, the result would be that she’d have died from the prematurity not because of the condition with her a brain because that wouldn’t have killed her, but it would have been prematurity. So that was the grey area. And he actually turned around to me and said, “Well, I don’t want to end up in coroner’s call if you decline KCL.”

Alison Ingleby 28:42
And there’s no, there’s no way you can, you know, sign an indemnity form or whatever, to take control and have this choice of what happens to your child.

Steph Wild 28:54
So I actually asked to see the neonatal team because I asked him to leave and saw a different consultant who was much better and actually came on to me and said, “what I don’t want for you, Steph, is for you to see your baby being resuscitated in front of you, when that’s not the decision you’ve made for her”. Which is how the conversation should have gone. But equally, I said, I wanted to see the neonatal team because I needed to hear it from the specialists of the babies, not the obstetricians. So we sat around for two hours, and no one came and I appreciate they might have been needed on the unit. But it was just a very difficult situation. And the be all end all of it ended up being that because legally, it’s not… 24 weeks is our viability age and it’s so grey as to what they’d do that basically, it would be subjective as to who was on at the time, whether they’d allow a baby to die with us, or be resuscitated. And after waiting for so long, I couldn’t make that be a risk. Because that was totally against everything I wanted, we wanted for her. And she then died in the hands of someone else because they resuscitated her and I just couldn’t allow for it.

Alison Ingleby 30:13
And they would try and resuscitate her because they felt that was their legal duty was to try to keep this baby alive even though you all know that it’s not, it’s not going to happen, it’s not going to do her any good and it’s against your wishes.

Steph Wild 30:27
Exactly, they would have done even though realistically, we knew she wouldn’t had a good quality of life. And that was the whole reason we were going down this route to begin with. So it was just literally going to be whoever was left stood in my corner… or didn’t. And I’d have to find that just after giving birth, and then having that battle on my hands and I thought, I can’t even do that to her, let alone me.

Alison Ingleby 30:52
That’s me that is an impossible choice to make, really, and I’m really impressed by how brave you were to to stand up to them actually. And to go, No, I want to speak to someone else. And I want to speak to this team. And actually, in that situation where you’re completely in shock. And, you know, I guess you and well, I don’t know, perhaps my natural reaction to be well, I do what the experts tell me… For you to really kind of push back against that must have been… Well, I think you were really brave for you to fight for your daughter’s corner and for your corner in that way.

Steph Wild 31:32
Thank you. It was, I think it was really hard because you’ve got the battle of, I don’t want to be this massive pain, but equally, she’s got rights and I need to do something for her but equally, again, kind of at the end of the day, this isn’t all my area of expertise. And there are things that people know that I don’t and so it’s trying to waive the right flags, but equally, at the end of the day, it was all about her and I needed to do the best by her and that was my only way that I was going to get the parent her so I needed to do it right where I could.

Alison Ingleby 32:05
Yeah. So So you went, so you took that decision went for that process. So you essentially have this injection, which stops these heart, and then you go through a normal sort of induction process as anyone else would.

Steph Wild 32:21
Yeah. Yeah. So exactly that and I decided… they asked if I wanted some time to wait afterwards. And I decided not to, I wanted to go ahead straight away because with my clinical knowledge, I knew that being in a warm environment and having died, she would start to change and I needed her out as quickly as I could get her out. So I would have to start straightaway. Yeah.

Alison Ingleby 32:44
And, and in terms of because of your previous experience, and I guess you knew more than the average, you know, first time parent going into this. Did that help you in terms of understanding what to expect and what support you could ask for and things like, you know, the memory making and what you wanted to do with Bea after she was born.

Steph Wild 33:06
So, I think it helped to some degree because I actually sat down with my partner and I sat down with family and I went through everything with them and almost like, prepared them because someone had to and it wasn’t going to be their staff, clearly. And I knew what I wanted. And I think I took from the guidance I’ve tried to give families in that take everything I can because I might not want it and it might feel uneasy, and some of it I might be like, I don’t know if I do want it, but if I’ve got it in 10 years time, I’m not gonna regret it if I then say, I really wish I’d had that. So I took from that, that opportunity and seeing other families having come to a support group in 10 years and say, “do you know if there’s any way I can get the photographs?” and I’m like, “Did you have any taken?” and they’re like, “Not that I’m aware of but I think they’ll be in my notes”, and they haven’t been. And I thought I can’t, I can’t be that family. And if anything, at least their babies taught me something. And they were also, it was also difficult because my partner’s perception and my perception were completely different. Because this is something I’ve been around a lot. And I know that it is normal to take a picture of a dead baby. And I know that is and I know they’re beautiful, and I know that that is normal. Whereas for him, he was like, this is really weird. Why would we do that? And I also understand why people think that because we don’t tend to do that with an adult death or it’s not talked about and you don’t..you might not have seen your friend whose baby’s died on Facebook, but it happens and we do that and it is a common thing. You just might not have been surrounded by it. So it becomes weird to you. So it was just making sure that for me, I said, I want to do everything and then at least if we’ve got it, I can’t regret it. And it doesn’t make everything comfortable to me. For instance, we got a 3D cast on. And I could not watch her have them done. And they were as gentle as possible. She was respected. She had her dad involved while they were done, but it didn’t make it okay for me to watch, because I just couldn’t tolerate it. So it doesn’t mean that it wasn’t hard as well. But equally, I was prepared that there were those options there.

Alison Ingleby 35:34
And I think yeah, I think that what you said, it kind of goes back to I guess what I was saying about, about what this expectation and lack of knowledge is around baby loss and you know, what the expectation is ,what you’re expected to do, what you’re expected to not to do, you know, and I think if you haven’t been through the experience, or don’t know someone who’s been through the experience, then you might think all of it is crazy, but when you have… when you do go through it then you realise actually, and maybe not at the time, but as you say, afterwards ,actually how important that can be in terms of the healing journey and kind of, I guess accepting your role as a parent of a child albeit not a living child. Can I just go back if you don’t mind just to talk about gestation again. So, as a midwife, you know, this 24 week cut off, which in the UK for anyone who’s listening who’s not in the UK, so that separates what is legally defined as a late miscarriage versus a still birth, and that means things like if it’s classed as a stillbirth, you get a stillbirth certificate. If it’s a late miscarriage, you don’t legally you don’t get, you know any legal record of your baby … that your baby existed. And it’s also associated with a date from which you can claim maternity pay if your baby’s stillborn. Did her being born a few days before that gestation affect what support you received and do you feel like it affected your loss in any other way?

Steph Wild 37:06
It definitely did. But I don’t think I thought about it. And I wish someone had advocated this before. So for instance, I actually had a break in service only like a year before… for it was five weeks of break in service. That entitled me to not actually get full sick pay, I could only have sick for three months because I wasn’t allowed maternity pay. Even though I categorically asked my manager at the time, I actually asked my manager to come to the room because I was always so worried about it. I said, I need reassurance of where I’m at so at least in my head, I can prepare myself to come back in three months. Or I know that I can have longer or can I work holiday pay or whatever, how do I work it. And so I was told, don’t worry about it, you’ll get full sick pay.

Alison Ingleby 38:03
And that didn’t happen.

Steph Wild 38:04
Absolutely not, I got a phone call, I think about 10 weeks, or eight weeks, something like that in down the line, saying, “We just want you to know that in a couple of weeks time, you’ll actually go down to half pay”. And so that categorically was not what I was told. And so I then became quite resentful towards the person who said, even though I put everything on the table and said, this is where I’m at, and I know why I shouldn’t be, but where do I stand? And so I was just …It had to obviously happen that way. And I obviously didn’t get a birth certificate or a death certificate. And I was lucky that I got a Louis Memory Box. But for some reason the Memory Box didn’t have a certificate in that they normally have, so that was never filled in or if it was taken out, it wasn’t put back. I don’t know. So I never actually got anything until a month down the line my bereavement midwife had recognised that that was a difficult thing and did make something but when you receive a month down the line after mentioning it, I appreciate the thought but it was like, well, I wanted her acknowledged when she was born. And that didn’t happen. And yeah, then obviously, I didn’t get maternity leave, which actually affected me more so because I never planned to make a charity obviously, until Bea died. And then when I did, because I was on sick pay. I wasn’t allowed to do me any voluntary work because I was on sick pay.

Alison Ingleby 39:40
Oh my goodness, this is ridiculous.

Steph Wild 39:42
But if I been on maternity leave, I could have done all the voluntary work I wanted. And my first day back, I was actually, well technically call it discipline because I had to tick a box to say I had done some voluntary work in my sick time and was told that I shouldn’t have done even though actually, that time was holiday pay.

Alison Ingleby 40:06
And despite the fact that, you know, this could have been beneficial for your mental health and actually preparing you to be able to come back to work and kind of function that seems, yeah, I had no idea that that that that was even a thing. And I guess going back to work, you must have been incredibly challenging and emotional, not just going back sort of so soon, you know, while you’re still very much in that kind of those dark days of grief, but also going back to the role you are going back to. How how did you find that and how did you manage it?

Steph Wild 40:43
So for me, work has always been like a big part of my life. And for me, I wanted to go back because I was at home on my own. That wasn’t normal for me to be at home, so much, so going back to work was almost my safe place, and I did want to go back, but also recognised that this may be a very difficult transition because of the job I do. And so I had a meeting before I went back to work and said, “Can I go into a non clinical role?”, and I was told I could, but they said that they didn’t know how long that would be for because there wasn’t necessarily a job for me to do … so I would have to come back clinically. And so I did go back. And then I actually recognised that wasn’t the time I should be going back, I found it too difficult. And it was actually before Bea’s due date. So I decided to take another month off at half pay. And thankfully my partner was supportive enough that he could financially support me for that for that month. And then not long after I …after another month, I went back to work again. And because I had that break … I’d only actually gone back to work for five days. And then because it wasn’t a full three months, I wasn’t entitled to a phased return. So I was also only allowed to work non-clinical for I think it was like a week, a week and a half I worked non-clinical. Because that was classed as my phased return, so I went back to that and worked full time in the office for five days. Then the week after I did like two days, non-clinical, three days clinical, working alongside someone, but still clinical. And then after that, that was it. I didn’t have anyone ask me to come and have a meeting or see how I was doing, was this okay, was it not, did I need any additional support. And I just pretty much got on with it. And I just thought, well, this is how it is so I’m just going to carry on. I then checked my online roster and only about six weeks after going back, it said that I was about to go to … I was working on the labour ward, that’s where I’d been based… that I was going to the postnatal ward. So, um, I’d been on the labour ward at this point for about three years, consistently, so it was a bit of a weird change. So I emailed the manager and said, Are you aware that this is happening ? I don’t feel like it’s appropriate at the moment so is there something we can do about it? I didn’t get an email response and then I saw the manager hand over at the beginning of a shift one day, so I ventured it to her and she said, “Yeah, unfortunately, there’s nothing we can do about that.”

Alison Ingleby 43:45
Goodness. And you’d expect I mean, you’d expect these people to understand more than you know, perhaps a regular employer or an office job or something, you know, who has no experience or concept of what baby loss is like. These are people who are dealing with it day, in day out, and it sounds like you had pretty much no support or or backup, even when you had really quite reasonable grounds to not want to be moved.

Steph Wild 44:11
Exactly. So I actually took that higher, to somebody above that person. And they said to me immediately that I was not going to move, I would stay on that ward where I was. And that would be for at least 12 months, subject to review and that. And so it was all changed on my online roster. Everything was fine. And I felt like I was at my nice constant and I was coping so … and that’s what I needed just this constant of I knew where I was at. So then a couple months later, on my roster again, it had come up in the November I was due to move to an area that I’ve never worked in, which was basically for people who have elected caesarean sections. And I’ve never worked there, like for a long time… I’d done the odd shift on there. And so I raised this again to… I think I actually ended up in the end emailing three different people because I wasn’t getting responses or someone would say to me, it’s this person. So I emailed three different people, didn’t really get any response. So I emailed again, again, no response, and I thought, I’m just going to go with it because no one’s listening. So I’ll just see what happens. The date that I moved ended up being a week after Bea’s first birthday, and I went and I changed manager, changed team. I knew who the people were that were in that team, but I didn’t know them. And, I worked a lot on my own because you often are in theatre, so you are really on your own as a midwife. You’re not really around, you’re around a theatre team who often are working quite independently anyway. There were also a lot of rainbow pregnancies – pregnancy after loss – who come through there because a lot of people do prefer an elective section understandably, so there were a lot of emotional turbulence of all this as well. And then I found that after a few weeks and just feeling like no one’s listened, and I just feel alone, I broke down. And I literally sobbed like I’d never stopped before, and eventually got taken into an office by another manager that I knew. And she then got the bereavement midwife, got the manager that I had at the time, started chatting to me and I was just like, I just feel like not being listened to, this is all too much. And I’m not really a crier. So this was a shock for a lot of people because I can cry, and so they were … I couldn’t even speak, I was sobbing that much. And, so the then got the the person who I’d gone above… like the person who had helped me before, she came. And I explained the situation, how I felt like I had not been listened to. And I said, basically, regardless of the fact people are busy, and I appreciate how busy everybody is, it’s no excuse to not reply to my email when I’m asking for help. Because no matter how busy you are, that’s your role. And she then actually said to me that only a week before I’d took… A week before I’d started on that ward area, I had took annual leave. And I actually worked at the beginning of the week doing some extra shifts because I just wanted Bea’s birthday weekend off. I thought that guarantees me the week. And if I’m not up to it, I don’t have to work. And I chose to work earlier in the week. So I’d worked the night shift on a triage department, so someone come in inin labour, they asked me to transfer her to a midwifery led area. I took her up there, she was with her partner, she was labouring. And all of a sudden, it dawned on me that a year ago today I was in labour. And it just like hit me and I was in this room with just them. And as much as it was lovely, I was just like, No, I’m so close to just losing it. So I came out the room for five minutes, spoke to some other staff on that unit because they’d asked me to stay at the time. And I said I’m really sorry, but this is a situation most people who I work with know my situation. And I just can’t do this today. Is there someone who could switch out with me and care for this family? And it wasn’t a problem, carried on, went back to where I was working. This same person then brought up that situation and got told that she was made aware of it, and why am I complaining about working in the area that I’m working now? Because I clearly can’t look after labouring women.

Alison Ingleby 49:14
That’s ridiculous. How to make someone feel even worse about themselves.

Steph Wild 49:19
So I said, I’ve worked on a labour ward for months and months and months now, and even years before that, yet, that was one isolated event, because…

Alison Ingleby 49:29
On one particular day as well for a particular reason.

Steph Wild 49:32
Yeah. And at the time, I just didn’t have the words to say anything. So I didn’t. And I just… She said to me, I think you need to actually take some time away and decide what it is that you need or you want. So I actually went home. And at first, I was like, right, I’ll go back tomorrow and carry on and then I thought, No, I need to have someone listen to me, I need a plan in place, I need to work out what’s going on in my head. And what the issue was. And I think … I turned around to her and said, the issue I had was not that I was caring for somebody in labour, but when it was, and that’s a very isolated event. And actually, when that was raised three weeks ago, wouldn’t it be better to rather than say, “oh, Steph, clearly can’t look after someone in labour”. Shouldn’t she have gone, “Oh, I wonder if she’s okay? Should I ask her if she’s okay?” Not, Oh, she can’t do that. And I just thought, that was were you’ve not noticed clearly, potentially a red flag. And so I then said, I need a plan and I need to get things in place better. And, so I ended up having six to eight weeks , something like that off work, mostly because they want me to go to occupational health and I couldn’t get an appointment because it was around Christmas period and so it took longer even though I wanted to be back in work. I did go back. And the plan just never… despite having had a plan, it never actually went to plan. And I eventually left my post in September last year. Because… I always like to tell people it’s … and I did at the time that because I want to focus on the charity, and I do, I really do, because I love the charity. But I still have to work full time to make this charity work, as a midwife, because I’m not paid for this role. But I left because of that, not because of the charity, but at least I do have the charity to almost use as an excuse, but that was the real reason.

Alison Ingleby 51:40
That’s a really shocking story to me anyway. And I’m sorry you were treated like that. That does lead us nicely on to talk about Beyond Bea which she set up in 2018. So could you tell us a bit about what the charity is aiming to do and why you set it up?

Steph Wild 51:56
So we set open January 2018. So it was nine weeks after Bea died, that the charity started. Yeah, so my plan, obviously, as I’ve had a lot of involvement with baby loss, and I’ve always wanted to change things, and I also recognise from the health professional side that how are we supposed to do things the best if we’re not being trained to do it? Because as a student, I got two hours where a bereavement midwife came in for an afternoon, and that was all that was my bereavement training. And apparently, that’s done. And most people I know have had very similar if not even that, they’ve never been exposed to a bereaved family because people either protect them or they just say, Oh, no, no, you need you need to get your delivery. So no, no, no. And so they’ve not had any exposure then until they’re qualified and hey, here’s a bereaved family and you’ve got to practice. That’s not how it should be. So I thought, How do I make this better? And at first I thought, I’ll run a conference. I know quite a lot of people in the baby loss field, I can probably put a conference on. And then I thought, one day is not good enough. And it’s not going to train enough people. And then I thought training is so inaccessible, where there is training, it’s expensive. Where there is training, it’s not always good enough. And it’s not specific enough, and not always delivered by the appropriate people. And I thought, I’m not saying I’m the best at what I do, because I’m certainly not, there’s always room for improvement. But I’ve got a certain level of knowledge professionally. I’ve certainly got a level of knowledge personally. I’ve got experience that I’ve just had through people I’ve met. And also, I’ve now got a platform to be able to create. And so I thought, I’m going to try and make sure people can get training and it be accessible. So the plan was always that it would be free so Beyond Bea was created. It was Beyond Bea because it was exactly that – Beyond Bea. It was always going to be about Bea because that was the whole reason it was started but it would always go beyond her and it’s actually about everybody else, but she’s allowed that to be about everyone else. So I didn’t want it to just be her because there’s so many people involved now that it isn’t just about her, it is about them. But she’s made that be the difference. So, um, we’ve basically set about to …Initially I spent what money I had in my bank and bought dolls and my partner thought I was insane by having dolls in the spare bedroom and just not being fully aware of what I was going to do. And then basically just put together a programme that I’d wrote myself and and it went from a 10-4 study day to what’s now a nine to five study day. And so it’s primarily that we raised awareness through social media mostly, putting posts about personal aspects of things I’ve actually experienced and things that other people have experienced so that it allows people to see that side that it’s not just, it’s not just this and it’s not just that and actually there’s more to it than what you might see in the media or not on the TV for instance. And then also study days. So we deliver study days anywhere in the UK, and we’ve pretty much tried to make sure that they’re always funded. So first year, we did eight study days, and we didn’t charge anyone for them. Last year, we did 42 study days. And so we’re very thankful to 4Louis who’ve funded half of those study days for us and then we funded the others through just, literally, we were the ones who packed bags and did Tough Mudders and ran marathons and things like that. And whatever we can do to just raise funds to keep them going. And then this year we did the same. We’ve also, we’re already fully booked for the 40 funded study days for this year, before the end of last year. So we’ve now tried to make sure that we enable people to still access them by being able to book and they can fundraise for them or donate funds or do whatever to fund a day. But they’ll only ever cost what it physically costs us so we don’t make a profit, we’ll just make them as accessible as we physically can do, so that anyone can access them. And so in addition to the 40 study days that we’ve made sure that will fund every year, there’s also a way to go around that and fund your own and also allows families that can do them in memory of their baby. And we run one conference every year that is the very same concept. And so we want it to be free. So we, we link with a midwifery society at a university so it basically get students involved as well and opens up a platform for them to engage with us and also throughout the UK, so we link with them and post that.

Alison Ingleby 57:27
That’s amazing. And I had a look at your online diary and you have a huge number of study days and things going on and you’re working full time. How, how do you mentally… I guess physically and mentally juggle all these things while your own grief journey must still be ongoing? Are there times when you just feel like you need to take a step back when it all gets overwhelming.

Steph Wild 57:50
There have been times and I think it’s been very much a learning curve and there were times, so like in the first year where it was around Bea’s birthday. And I recognised that’s not a good time for me because it’s very real. So the following year, I then always make sure I book three weeks off around her birthday, and I actually went away last year, so… And then just recognising when things are too much or when you should pass things over. So it was … it was even the basics of managing the finances. That’s not what I should be doing. I should pass that to someone else so I don’t think about that. And trying to make sure that you ask for help. And someone can help with emails or they can cover that role or just Yeah, sometimes just saying, Would you mind doing that so that I can not do this that day? Or just yeah, it’s just, it’s been a learning curve, because I’m not very good at…. I’m very good at doing everything because that’s how I am and clearly people know that that’s how I am. But recognising that it is okay to ask for help, and whether that is sometimes saying, I can’t do that study day or I can do that, or can you do this so I can have that day off. But equally I’ve also made sure that we’ve set off a cut off of how many we do in a certain week, and,also thinking about things like travel times and things so I’ll only do so much. And then what I’ve tried to do as well as now that I am in control of my work, I work at an agency as a midwife instead now, I’ve pretty much made sure that I don’t really work weekends. So when most of my friends and my family are off, I’m off, which I never had before, because I worked a lot of weekends. So it’s getting that balance and being like, No, we’ve changed so that all of our emails and social media aren’t answered on the weekend. So it can wait an extra day. I know it’s everyone wants to get them booked, but it’s not urgent, from Friday to Monday to wait. So we people do wait. And thankfully people are very supportive of that, and they’re happy to.

Alison Ingleby 1:00:10
Yeah, and it is really important because you can’t look after…. I mean, it’s a cliche, but you can’t look after other people if you don’t look after yourself. And I think, I think also particularly, perhaps when it’s something so close to you know, it’s something you’re doing for Bea, it’s the way you can parent her, then perhaps there is a tendency to go, Well, I should be doing everything I possibly can. But actually, what you know, what Bea would want you to do is to be able to look after yourself and have have that time away from everything and that separation because you can’t you can’t be involved in this 24/7, you just you can’t do it. It’s too overwhelming and that grief can become too overwhelming. So it sounds like you’ve obviously had a learning curve, but you’ve got to a really sort of sensible and balanced place with that. And I think also I mean, I think this whole episode of the podcast and what we’ve talked about has emphasised just how important and valuable the work you’re doing is and how varied, you know, bereaved parents’ experiences can be. So thank you for doing all of the work that you do. We are about out of time, say thank you very much for sharing your story and also telling us about Beyond Bea. Could you just before we finish, tell people where they can find out more about Beyond Bea online, and if they want to donate or help support your efforts in any other way.

Steph Wild 1:01:34
So we are across basically all social media, so we’re on Twitter, Facebook, and Instagram. So you can find us just by searching Beyond Bea Charity. And then we also have a website. So that’s www.beyondbea.co.uk. And all the information and information about donating and fundraising opportunities is also on there, too.

Alison Ingleby 1:02:00
Fantastic and I will put all those links in the show notes. Thank you so much for coming on to the podcast, Steph, it’s been a really great conversation.

Steph Wild 1:02:07
Thank you so much for having me. I’ve really appreciated it and I’m looking forward to following the future ones too.