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Losing a baby at 20-24 weeks of pregnancy

Counselling and other sources of support

Parents grieved the loss of their baby intensely, and many found it very hard to cope with their feelings. Parents often sought support from their partner and family and friends. Talking about their experiences and loss was a way of coping for some, but not all. Some parents also felt the need for professional support via counselling or contact with other bereaved parents to help talk through their feelings.
 

Vikki Z emphasised how important it was to talk through your loss and get help straight away.

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Age at interview: 38
Sex: Female
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I think - I think get help straight away, and don't just try to carry on. Because I just tried to carry on as usual. And that really wasn't the best thing to do. Because actually it meant that I had a total breakdown, and that was worse for the children and everything else, by trying to carry on. So I think you do need to talk about it. And you do need to find that, you know, help is available. I don't think it's advertised as much as it should be. I think you have to get to breaking point before they tell you about it. But you do need to talk it through, you do need to deal with those feelings, you can't just like push them away and hope that everything will be alright, and - and just get on with life as usual. You can't do that. Yes, you have - especially like I say, with children you have got to get on with things, but you've got to deal with the, with what's going on as well. So yeah, I would say definitely - you know - go to the Miscarriage Association, get help from the hospital, speak to a counsellor, a bereavement counsellor if they have one. Those things are really helpful. Speak to friends. Speak to your partner. Speak to - I think just speaking to people about it. 

Because after a couple of months, people thought I was fine, because I didn't speak about it. But if I had have been speaking about it, then maybe - you know - I would have worked through the issues a bit, a bit more quickly. And then people don't want to talk about it because they think it'll upset you. Not knowing that that's all you're actually thinking about. But people aren't just going to bring it up, are they, if - if you're not bringing it up, because they wouldn't want to upset you. So yeah, definitely just get help.
Counselling

Counselling was often hard to access. While a few parents were offered NHS counselling, it was not common and rarely offered routinely and waiting lists were long. So parents often felt they were left to get on with their grieving alone. Some parents sought counselling via charities suggested in their baby’s memory box. Others received counselling through their employer or found a private counselling service.
 

Maxine and Steve felt that there wasn’t a lot of support available.

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Maxine: What we've been offered is going and sitting in a big group, and I don't want - I don't want to sit in a big group.

Steve: Well, you said you're not ready.

Maxine: I'm not ready. I think at some point I'd love to go and sit in a big group and just listen to stories, and -see how, see how I can be in the future, by looking at other people. But also kind of help people who've maybe just come the first time, and they're looking at me thinking 'well, she's six months - I can be like this in six months'. But at the minute, I couldn't - I couldn't go and sit in a group, in a circle, and - you know - 'I'm Maxine, my little girl Heidi died'. I couldn't. I can think of nothing worse than going and having to do that. I can see how it would work for some people, but I - I couldn't do it. And when I've, when I’ve had those dark days, and - you know – you’ve said about counselling and my Mum said, and - you know. There is support out there. I don't think there's a lot of support if you just want to go and sit and talk to somebody. I think the best way to do that is what I've found, by people - you know - strangers in the Sands community group, just messaging you and saying –

Steve: Mmm. Yeah.

Maxine: - you know, "I'm not saying I've gone through the same as you, but I know what you're going through because I lost my little girl or my little boy." But I don't think there's a lot out there, one on one, or for couples, that you could go and sit and talk just to one person, or. You know, I think it's a real - there's a real stigma attached to people offering to do that. You know, that's something we've - you know - we've said. Our choice is, we go and talk to a big group. Which we don't want to do. You know, it's different people. I don't think you'd want to go and sit and talk to anybody –

Steve: No.

Maxine: Whereas I'd be quite happy to go. And I think it comes back to what I said about - to me, the talk - if you talk about it, you're not forgetting about it. 

Steve: Yeah.

Maxine: Whereas you, you grieve differently. And maybe – 

Steve: Yeah. Well, like I said to you, I just get those moments, don't I, you know what I mean? I can - I can sort of - not focus, but you can get on with life and things like that. And just think right, you know, she's always in the back of my mind. But it's certain things. So.

Maxine: But I think it's - you know - when I've talked to friends and things, and they say "Well what support are you getting?" There is, there is support out there, don't get me wrong. And Sands, and you know, community midwife - or not community midwives, bereavement midwives. 

Steve: Yeah.

Maxine: They're, they're doing - they're playing a role. But there's not -

Steve: But like you say –

Maxine: There's not enough out there if I just wanted to ring up somebody and say "Can I come and see you, I need to talk about this?" There's nothing.
Many found counselling very beneficial. Elaine said it was a “real lifesaver” although she did find it extremely hard returning to the hospital where she had lost her baby for the sessions. Kelly said she bottled her feelings when close relatives were around and found counselling offered an opportunity to talk.
 

Sam found counselling extremely helpful and looked forward to her sessions.

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Age at interview: 26
Sex: Female
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And, oh my counsellor was amazing. She was my fairy godmother. And [laughing] I. Yeah. I remember the first time I went, actually. And it wasn't my counsellor that I saw, it was just for like introduction - an introduction one. And I took my partner at the time with me. And he - because he was adamant he didn't want counselling, and he didn't want anything, he was going to survive. And, but I made him come with me to this first one. And we were sat there, and you know, they're asking about our experience and everything. And I think that was the first time actually that I realised I needed counselling. Because I couldn't talk about it. I couldn't - I was a complete mess in there. And - And I'm not like that generally. I can talk about quite difficult subjects without, without getting too emotional. So I think that was the point when I realised actually - you know – help, help would be good [laughing]. And the following week, I went back. And I actually went - I actually went for quite a long time, on and off. I think it was three, three or four years in total, that I went. 

But I didn't only discuss Alfie. There was a lot going on that led from that. To do with my family, and my own personal experiences. So I think Alfie was a starting point for me, to actually improve myself in general, not just because of, because of this. So, yeah. So yeah, I went for quite a while. And my counsellor was amazing. I loved going to see her every Friday. I looked forward to it, [laughing] to be honest.

What made her so special?

I think because we - It was, it was very - very relaxed. And I mean, sometimes it would just feel like you were meeting up with a friend for coffee. It wasn't - you know - 'we're going in and we're going to talk about this'. You know, because I have had friends that have had bad experiences with counselling, because they felt very forced into talking about certain, certain subjects. And my counsellor, [counsellor’s name], she was brilliant. She - I'd just go in there, and she'd say, "So, how are you feeling today?" And it would just start the conversation. There was no, there was no awkwardness. There was no - I never felt like I needed to explain myself to her.
 

Lindsay found counselling gave her time each week where she could let the barriers down and cry.

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Age at interview: 35
Sex: Female
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Whereas I didn't get referred anywhere through - from a health professional, but did from work. So I went to see a really lovely counsellor. But I think what was a bit tricky is that she was very good at validating my feelings, and actually she was saying, "You know, everything that you're feeling is really typical. There isn't anything we need to counsel you about, or you've got goals to set." It's not like if you go for anxiety and she can say "Well, try these strategies and then come back in a few weeks." 

Or that I have anger issues, you know, those sorts of things that I think the more rounded counsellors maybe are more used to dealing with, as such. So it was fantastic. I went for a long time. And it was fantastic, because it gave me an hour a week where I could just let the barriers down, and cry, and talk, and say the same things over and over again. And she did a lot of listening. It was very much like talking therapy. But I think with hindsight, I would have liked to have pushed to see a bereavement specialist counsellor, really. 

Because I think that bit has kind of been missed, a little bit.
Fathers were rarely offered counselling. Asun felt “everything is focused on the mother, isn't it? You have the midwives coming to see you, and the bereavement midwife, but normally - it's not something that's offered to the dads... and the loss is for both.” Some couples actively sought counselling together as they were aware that bereavement can often lead to relationships breaking down. Joelle found that when “things are difficult, it gives us the opportunity to talk about them in a safe space.”
 

Mike and Emily went to counselling together. Mike was reluctant to go but found talking to a complete stranger really helped.”

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Emily: We made it into a date night, didn't we [laugh]. So, we'd go, we'd have an hour session, and then we'd go out for supper or something afterwards, just to make it a bit lighter. Because it could be quite emotional. But yeah, that was –

Mike: I, really - I didn't want to go. I was like 'I don't need to talk to a stranger about this, I'm fine - I'm fine, let me deal with it in my own way'. But then when we did go there, I went obviously to support Emily, but when I got there it was actually really good, to talk to a complete stranger. 

Emily: Mmm.

Mike: Yeah.

Emily: It made me laugh, because he was like "I'll go just to support you," and then I couldn't shut him up [laughing]. So, so we're kind of here now, I think, and - We talk about her a lot, don't we, and - But probably not in depth. We'll mention her in passing. But I think this is first time I've forced myself to go through it again, so. It's good to do, I think, because I do think I'm starting to maybe try and block it out, because - I feel like it feels more traumatic now than it did even maybe sort of six months ago or something, I don't know why. Maybe because we're potentially on the verge of thinking of trying again. I don't know if I'm starting to feel nervous again, I don't know.
Some didn’t find the counselling helpful. Kamie felt her counsellor didn’t understand her and focused on whether she wanted another baby rather than her loss.
 

Camille described very different experiences with two counsellors.

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Age at interview: 26
Sex: Female
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This may be a really difficult question, but I wonder if you can describe what it was about the Cruse counsellor who was so good, that they were doing that worked so much better for you? 

[Sigh] Because the person cared. And she was really listening to me, without having to paraphrase anything. I knew that she was completely listening to me. And responding to me. Not just paraphrasing what I was saying, she was actually responding to me and saying that - you know - my feelings were normal, and that was the stages of grief, and that's what people go through, and. Just being human. If that makes sense [laugh].

And I think sadly they sort of lose that when they do counselling, because they're trained a certain way, with the active listening skills. Which are good to some extent. I think you can't just do that for an hour, and just be looking at somebody and just paraphrasing everything that they say. Because that's showing that you're listening, but that's not enough. And the other person showed me compassion. And reassured me that the way - It was as if she was - She specialised in bereavement, which also helped. But I think also the fact that she was a volunteer. She really cared. She did it because she really cared. And that probably was a big thing as well. She was just generally a very, very nice person. And I just felt like I got close to her. Without really knowing that much about her, I felt like I actually got to know her as well, because of how she was with me. If that makes sense. I don't know, it sounds a bit strange. But, yeah. She was just more human. That's what I can say. Whereas the other woman was, yeah. It felt more like a robot - like a professional. But like a professional robot. And that's just paraphrasing everything that I say. And that wasn't very helpful.
Some felt that the counselling didn’t come at the right time for their grieving, which was very personal. David Z felt an organised slot for counselling wouldn’t work for him as he wanted to speak about his loss when the timing felt right for him and not at a fixed appointment.
 

Lisa and Matt felt were unsure whether to access counselling services as they weren’t sure what they would talk about.

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Matt: I think there was - There was a number for bereavement. You spoke to a bereavement midwife.

Lisa: Yeah. 

Matt: And I think there was numbers for counselling and things. 

Lisa: Yeah.

Matt:  But –

Lisa: I think it's all just too blurry straight after.

Matt: Mmm.

Lisa: Like there's a number for this, and a number for that. And you don't really know what you need, or what's what, to be honest. It's good to know the numbers are there.

And I think there was one - is she a midwife? I don't know. Who basically, yeah - like you say - deals with people with bereavement. And she phoned me, which was very good. So I've spoken to her on the phone once. And we talked about meeting up. But I think [laugh], sometimes I find it hard to know. Like if you organised to meet up, then what are you meant to do? Are you meant to just talk about things, or? 

I didn't - yeah. Maybe I didn't really - I don't really understand whether - Because it's not counselling. Yeah. I think I find that sort of thing difficult. Because if you instigate something, then you feel like you must have something to say [laugh].

So I'm never very good at that sort of thing, am I.

Matt: Mmm. But I think - Also, I think because we'd had some preparation. We had a week or two of kind of getting our heads round this whole thing. I think if we hadn't have had that - perhaps that processing afterwards, we would have had a lot more questions.

Lisa: Yeah.

Matt: If we'd have gone in that first time, and it happened straight away at nineteen weeks, it would have been a lot different.

Lisa: Yeah.

Matt: To when - yeah, we'd been able to process some of it ahead of time. 

Lisa: Definitely made certain things easier, but some things harder with that, I think.
Support from other bereaved parents and bereavement organisations

Many parents attended face-to-face support groups with other bereaved parents. These were either at the hospital or organised by national organisations such as Sands, (the Stillbirth and neonatal death charity) or the Miscarriage Association. Some parents were also helped by smaller local organisations. Parents found contacts in their baby’s memory box, from staff or friends.
 

Sharon was asked by the chaplain if she would get involved in setting up a local parents’ bereavement group.

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Age at interview: 45
Sex: Female
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And eventually I chose to stop seeing the counsellor at the Pregnancy Awareness. And the hospital chaplain asked me would I get involved in setting up a group for bereaved parents. Which I did. And we raised money for the hospital. And we went back to the [bereavement suite name]. And we had photos in the garden. And we met a lovely group of parents who had been through the same hospital, who the chaplain put in touch with each other. And then for about eighteen months, we ran a pregnancy loss, a baby loss group. And we became really good friends, and we'd go out together, and. And all our lives took a different path. But we always came back to each other whenever something happened. And even now, unfortunately one of them's husband died, and we - all the pregnancy - were at that funeral, even though we hadn't seem them for so long. Some of them have children. Some of them didn't. 
Contact with other bereaved parents was often an incredibly positive experience. Parents often found they became part of a very supportive group of parents with diverse yet similar experiences at various stages of grief. Helen explained “they just get it straightaway”. Parents found it helpful listening to other parents and their experiences and feeling a connection with them. It allowed them to see other parents who were moving forward with their grief or had become pregnant again and had a healthy baby.
 

Sands meetings were incredibly important to Vikki. They gave her time every month to talk about her baby.

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Age at interview: 33
Sex: Female
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Those meetings are - I've actually classed them as my heroin. I need those meetings. It's like two hours once a month I get to talk about my baby. My baby that was stillborn. She was stillborn. I don't mention her name to many people, but I like talking about her, and about my feelings, in them sessions. So in a way, that is my counselling. And everyone feels the same, I think, to a certain extent. That, you know, that time does slow down for them, and life carries on for everyone else, and it's not fair. I think we all feel the same. So, trying to work through that on a grand scale, it's quite difficult trying to persuade everyone that - you know - you feel the same as me. You're not isolated, you're not on your own. And that's - that's the one thing actually that made me need to go, because I did feel so isolated. And so alone. And so that nobody really understood at all what was going on. But they did. These people get me. They understand. They've been there, they've done it. And a lot of their cases are a lot more tragic than mine, and they've gone a lot further in pregnancy than I did, but they still accept that actually - you know - I went through something similar to them, I still lost a baby. And grief is grief. It doesn't matter if your baby died at eight weeks or sixteen weeks, or thirty six weeks - you know - you still lost a baby. And as soon as you get the pregnancy test, you assume you're going to have that baby. And you think about their first birthday, and their first step, and when they're going to get their teeth, and their first words, and everything. And yeah, it's not just because I lost a baby at twenty one weeks, it's because I lost a baby. Full stop. And that's nice, that everybody can be in the same boat.

I shouldn't have to be in this position, I shouldn't have to have lost a baby. I don't want to be friends with these people because we've got dead babies in common, that's not a nice thing to have in common with someone. But these are the nicest people I've ever met, that I've never wanted to meet. It's really strange. It's like bad things don't happen to bad people, do they, they happen to good people. And they're just everyday people. And it's sad that we've all got that in common. I don't want that in common with them.
 

Loretta valued the time she spent with other parents who had been through similar experiences.

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Age at interview: 54
Sex: Female
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Before I came home, there was - they called a social worker, and she came and had a chat with me, telling me how I was going to feel, and all this sort of thing. Which I can remember - even now, I can remember just sitting there thinking 'you don't know what you're talking about, so don't tell me how I'm going to feel'. 

But she did have a number of somebody who was starting a miscarriage group in the local area. So she gave me that. And probably a couple of weeks later I did give that a call. 

Was that helpful?

Yes, yeah. It was really - it was really good. It was over in [town]. And there was probably five or six of us, all at different stages of pregnancy. And it wasn't - the conversation wasn't always about the loss of the baby, it was just nice to just sit with people that you know had been through it. So we'd be talking about the TV programmes and all this sort of thing, but it just - if you wanted to have a little cry about something, you knew that they could understand a bit more, and you didn't get the sort of 'well it's been this long now, you shouldn't be like upset any more', etc.
 
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Joelle found other bereaved parents offered her unconditional support.

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I think what's helpful is that there is like an unconditional support. You can say anything. So you can say, "I hate the fact that I'm covering someone's maternity cover." Which is what you want to say. When I say it to my Mum, she tries to solve the problem by saying, "Just leave." Or Adam will try and solve it. Or she'll reinforce it so much that a tiny thought becomes a huge thought. Whereas at the Sands meeting they're like, "That sucks." It's like 'yeah, that's all', you kind of just want someone to say that. And these people do. And also, it's useful to see people sort of a little bit ahead. So, it was the first anniversary yesterday. And you kind of think, 'actually, they've got there, and I can get there'. But it doesn't mean that you want to get there. It just means that you - And someone else who's like twenty five years further on, and you think - you kind of think 'oh my god, this is going to be here forever'. And there's that fear. But also you've seen that they've had another child, they've got on with their lives. And you don’t, you never really want to get on with it, you just want to find a way, a new way through it.
But contact with other bereaved parents wasn’t for everyone. Some found it brought up fears and anxieties. Sarah heard lots of stories of experiences worse than her own and “didn't want everyone to think that that's how it had to be”.
 

Sands supported Sam hugely through her loss but she felt much more aware of things that can go wrong in pregnancy.

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Age at interview: 26
Sex: Female
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And also, once - once you meet people that - I mean, now I'll go to a local Sands - Well, it's not local any more, but. To the [local] Sands group. Because I started going there when I still lived in [town]. And you meet people that have got totally different experiences to you. 

And actually, it's - It almost makes it harder, because you know how many things can go wrong. Not just this one thing. Actually, even if you get past that twenty week scan, you've still got this to worry about, and you've still got that to worry about. So it actually makes it more stressful [laugh] if you do get pregnant. So, yeah. I think there's too many ifs and buts for me to risk it, at the moment.
 

Helen Z found going to the local Sands group too hard because she started taking on everybody else's grief.

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Age at interview: 37
Sex: Female
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We went to a Sands meeting. We went to one Sands meeting. And I think that was in April. And it was just really hard. Because you just end up taking on everybody else's grief as well. 

That was a face to face meeting?

Yeah. So it was a meeting, and there was six women there who'd all lost babies. And my husband was the only man, who came with me. I don't know how all these other women came on their own. [laugh]. And there was three women that had lost babies between twenty and twenty four weeks, and then there was three women that had lost their babies at full term that was there. But. Yeah, it was just - it was just really hard, taking on everybody else's - you take on everybody else's grief as well. I thought - We didn't go back to a meeting, I found it too hard. 
Some parents preferred to find support online through groups like Sands, the Miscarriage Association and Antenatal Research and Choices. Helen found the Sands website was a “fantastic resource” because she could find “the story of someone who lost like me”. Online forums offered the opportunity to speak to other parents who had similar experiences without the need to be face-to-face. Many didn’t post on the sites but read others’ stories, although Elaine did use the Sands Facebook page to ask for help when she was unsure whether to tell her son about the loss of his sister. Courtney found an incompetent cervix group on social media very helpful to discuss her experiences and possible future plans. 

Fathers’ experiences of support groups were mixed. Some found there were no men at all attending and felt on their own. Others were surprised and pleased when there were mainly couples there. Fathers often said they would have liked individual support as well, but it was hard to access.
 

Sarah’s husband was worried about attending a support group in case there weren’t many men there, but was pleased when it was mostly couples.

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Age at interview: 34
Sex: Female
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We were contacted by a Sands group. And we did go to one of the group meetings My husband was a bit worried about going, because he thought well, there's not going to be many other men there. But actually, there were a lot of couples. It was mostly, mostly couples. And there was about four or five women as well, who'd come on their own, who had lost their babies much, quite a long time ago. So they'd started coming to some meetings on their own. But we, yeah. But we found that actually talking to a lot of other couples who had gone through the same or similar things to us, was really useful. And I think really particularly very useful for my husband, because I think a lot of people focused on me, and the fact that I was losing a baby, and as him as my secondary support. But whereas no, it was - it was very much, you know, his loss as well. Because I think people think about the fact that I had to go through the labour. But he was there for every single part of it too.

And having to talk - and talking to other men, other - yeah, partners and husband, he - I think he got, he got a lot out of that as well. And he said he didn't feel like he had to go again, he felt - he felt good just knowing that. 
Some parents regularly attended groups for a long time, while others just went a few times. It was a very personal choice. Getting pregnant again was often the point when parents felt they had to stop as it would be too hard for those experiencing fertility problems or had suffered repeated losses.
 

Sarah found support from parents who’d had a pregnancy after loss which helped with her anxiety during her next pregnancy.

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Age at interview: 34
Sex: Female
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Yeah, so I still get emails through for the groups, whenever they have a group meeting. But obviously I said at the moment I don't think I could walk in to a group meeting pregnant now. I think that would be awful for the other women who have just lost babies. But they've put me in touch with some other women who are also having a baby after loss. So that's been quite useful.

Just talking to a couple of other women who are also going, doing the same thing as me - they've lost a baby. Or women who - actually some of the women who have had babies after loss. And talk. So I could feel like I've validated some of my own feelings. That you know, I wasn't going crazy, because I was being super-anxious about certain things. And they've said "No, I was too." So it kind of - I think it's good to validate some of the things you're feeling, and know that you're not just being crazy or weird or anything, it's actually that's - a lot of other people felt the same way as you.
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