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.
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.Vikki Z emphasised how important it was to talk through your loss and get help straight away.
Vikki Z emphasised how important it was to talk through your loss and get help straight away.
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 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.
Maxine and Steve felt that there wasn’t a lot of support available.
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.Sam found counselling extremely helpful and looked forward to her sessions.
Sam found counselling extremely helpful and looked forward to her sessions.
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.
Lindsay found counselling gave her time each week where she could let the barriers down and cry.
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.Mike and Emily went to counselling together. Mike was reluctant to go but found talking to a complete stranger really helped.”
Mike and Emily went to counselling together. Mike was reluctant to go but found talking to a complete stranger really helped.”
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.Camille described very different experiences with two counsellors.
Camille described very different experiences with two counsellors.
[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.Lisa and Matt felt were unsure whether to access counselling services as they weren’t sure what they would talk about.
Lisa and Matt felt were unsure whether to access counselling services as they weren’t sure what they would talk about.
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.
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.
Sharon was asked by the chaplain if she would get involved in setting up a local parents’ bereavement group.
Sands meetings were incredibly important to Vikki. They gave her time every month to talk about her baby.
Sands meetings were incredibly important to Vikki. They gave her time every month to talk about her baby.
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.
Loretta valued the time she spent with other parents who had been through similar experiences.
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.Sands supported Sam hugely through her loss but she felt much more aware of things that can go wrong in pregnancy.
Sands supported Sam hugely through her loss but she felt much more aware of things that can go wrong in pregnancy.
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.
Helen Z found going to the local Sands group too hard because she started taking on everybody else's grief.
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.
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.
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.
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. Sarah found support from parents who’d had a pregnancy after loss which helped with her anxiety during her next pregnancy.
Sarah found support from parents who’d had a pregnancy after loss which helped with her anxiety during her next pregnancy.
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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