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Losing a baby at 20-24 weeks of pregnancy

Coping with loss of a baby at 20 to 24 weeks of pregnancy

Experiences of grief

For parents, the loss of their baby was extremely painful and represented the loss of a whole future. Carly described how: “Your whole world's destroyed in a second and all the things that you thought you would do, you just - you can't do them any more”. Michelle explained: “You've lost a baby, but you've lost everyone's expectations, you know, all the life you were expecting“.
 

Michelle and Ian felt they would never get over their loss but got used to living with it.

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Michelle: And it's not, you know - with any grief you get used to it. I always say, you know, it's like you get a scar, isn't it. You don't get over it, but you just get used to having that scar, and it's part of who you are. 

We would say we're definitely nicer people, more empathetic.

Ian: Oh, absolutely. Absolutely.

Michelle: And connected with people at a lot deeper level because of Arthur.

Ian: I think scar is a really good description. Because it's - you're assimilating it into your life, aren't you. It's a part of you. You're not ignoring it. You're acknowledging it. It doesn't completely take over and control you, but neither is it ever not there. You know.

You know, so it's not an open wound that needs emergency attention all of the time. Of course there'll be moments when it might just tear a bit, and you give it a bit of emergency attention, you know.
Some parents had only recently lost their baby (6 weeks), some were talking many years later. For many, coping with grief took months or years and they felt they were never going to be the same person again. While the loss was devastating, Michele and Iain felt that “we're definitely nicer people, more empathetic”.
 

Vikki Z felt that while she would always miss her child, over time she was starting to enjoy life again.

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Age at interview: 38
Sex: Female
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And I think as well, things do get better. You can't imagine it at the time. You think, you know - this is going to be it forever, it's going to be terrible forever. And it's all you can think about, the baby - constantly, all the time. And then it does get better. And you still think about them, that - you know - there's always something missing. But you're not thinking about them all the time. And you do gradually start to enjoy things again, and you do find happiness. 

And somebody said to me - it was somebody at - somebody said to me, "It's going to be two years." Somebody in a very similar situation that had lost a baby at the same time, "It's going to be two years." And I just - I remember thinking, six weeks or so after I'd lost the baby, 'two years - I can't deal with feeling like this for two years'. They were right. It does. It takes a long time. It does take a long time. And I'm not saying that those two years were all entirely bad, but it really - it really is, it's a long period of time before - It was pretty much two years to the day, almost, until I started to feel that I was getting back to myself, my old self, and really enjoying things, and. Yeah. Enjoying life. So it does take time. But it does, you know - things do get better. Yeah. Happiness does back. Because I just thought it wouldn't. I just thought there's no way I could ever be happy again. But, but yeah. You definitely can.
 

Camille felt she was learning to deal with her emotions but the pain “never leaves you”.

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Age at interview: 26
Sex: Female
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I think one of the things that one of the midwives told me, that did stick with me a little bit, is - I think at the time I didn't quite realise how life-changing it was going to be. Again, I think the word 'miscarriage' stuck in my head. It was just one of those things that you just get over. And I just remember I was saying something like that to the midwife, that - you know - everything will be alright once we get over it. And I remember her saying, "You don't get over losing a baby, you learn to live with it." And that's very true. It's - The pain doesn't go away. It never does. Does it get easier? Honestly, I don't know. I'm approaching Keira's third birthday, and I'm a mess. Just like I was the other years. I think what happens, you just - just learn to live with it. That's what it is. With time, you just learn to deal with your emotions, learn to recognise them. But it never leaves you.
Many parents described experiences of extremely profound grief. Emily described how she’d “never known grief like it”. Kirsty, Sarah and Liz described times when they didn’t want to get up out of bed. Sharon found it really helpful when her psychiatrist told her “‘You're just sad’… that's what I needed to hear. It's like 'yeah, I've not gone mad, I'm grieving'”. 

Anxiety

Some experienced panic attacks and anxiety after the birth while others had trouble sleeping. For Maxine’s anxiety felt like a physical pain “where you can’t breathe”. Many women developed anxiety about health problems. Vikki Z said she “had a real problem with anxiety afterwards… It was as if my brain had changed its way of thinking. It was like I was always on high alert”. Michelle felt she lost confidence in trusting her own instincts about her body because she hadn’t been aware that her baby had died during her pregnancy.

Anger

Several parents talked about their feelings of anger after the birth especially when seeing women who were not looking after themselves and their baby by smoking during pregnancy. Kamie questioned why life was so unfair “when you don't do nothing wrong, and you do everything by the book, and you still don't get your prize at the end”.

Grieving at different paces

Parents experienced grief at very different stages. Michelle described how “You know, if it doesn't hit you on the bum in three months, it might in a year, and that's okay.” Kerry unexpectedly found her baby’s memory box many years after her loss which triggered renewed grieving. Parents felt their grief could be brought on unexpectedly by anything such as seeing a picture, or hearing music played at their baby’s funeral.
 

Lisa could never predict what would trigger her grief.

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I mean, there was one time I did - I don't even know what it was. I still look back and don't know what it was. I just woke up feeling terrible about things. And . But it was a work day, and to be fair, it was a work day but I was meeting lovely women [laugh], to do bible study with them. Yean. And I just thought I don't think I can go. But I did go. But then I had a bit of - Somebody had a bit of road rage with me on the way, which just made me just completely lose it. So by the time I got there, I was - yeah. Not really sure whether I could go in the room. 

And I did. And then - yeah, just later just burst into tears there. But I don't - I don't know if that was a bad or a good thing. Because I guess it reminds people that maybe you're not a hundred percent. But I can't say what would trigger that. You know, people say to you, "Oh, is it because it's coming due date?" Maybe. I don't know. Like to me, it was just a bad day. Like there was no - I guess there are other times when you've been away and had you know, there's been everybody that's pregnant, and somebody was celebrating someone's - you know - whatever. Like someone's just had a baby, or - And it was like too much for one weekend. 

I guess that, when it's too much all at one time. But yeah, I don't know other than that. Yeah. The triggers don't always make sense to me.

One day it can be one thing, and the next day I can be fine with it. So I don't - and I guess part of it is learning to celebrate with people, at the same time as feeling loss. 

Which is - yeah. It seems to be something I'm learning.
 

Carly felt that while her grief would never go away, it did get easier.

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Age at interview: 30
Sex: Female
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But someone said to me, "When it first happens, you're going to feel like you can't breathe. And your grief is going to be like an ocean. So, all the waves are going to be hitting you, and you're going to feel like you can't come up for air, you can't breathe, and it's going to be wave after wave after wave. And then over time, it's like the sea calms a little. So the waves will come, but they'll be fewer, and further between. And then eventually they'll get even fewer, and they'll be less severe. And then eventually the waves will just come when certain triggers happen. Anniversaries, or music or something will trigger that wave. And the rest of the time you'll be on a calm sea." So it does definitely get better with time. But I still feel like wave crashes over me. Like just the other day I was walking down the street, and I put a song on - and it wasn't even one from the funeral, it was just a song that came on a list, and for some reason I just cried. And it just happens out of nowhere. And it, it's very sudden. But most of the time like I feel like a fully functioning human being. But I'm never going to forget my baby. Like I'll - I think about her every day.

You know, even if I don't talk about her as much, I think about her constantly. And what she would have been doing, and how old she would be, and - you know - we keep her alive in our house. Like I'll talk to [my son] still about her, and tell him he's got a sister that lives in heaven now, and . But it's - it does get easier. It never goes away, but it'll get a lot easier. 
 

David found his grief was triggered several years later after a traumatic event.

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And it caught up with me, several years later. This happened in 2001. In 2005 it actually caught up with me. And I didn't know it at the time. Strange story, was - I'd taken the day off in 2005, to go - And we went to see Lauren's grave. We had a headstone done at that stage. And I went to see Lauren's grave. I don't know why I went to see her. It was a Tuesday. And the date was 7/7, July 7th 2005. And I worked where those bombs went off. And I normally go on the train that these, those guys took. And the bus that these guys took. Not at that time, but that was my journey. Not saying I would have been on those at the time, because I usually get in at seven o'clock, so I would have missed it. But for some - I took the day off that day. And I went to see Lauren. And my son, bless him - he now knows all this these little stories. He said was Lauren keeping you safe.

But the follow-on from that was I got back in the car, Elaine had driven. Got back in the car, and we stuck the radio on about nine o'clock. We went early as well, it was nine, nine-thirty. And the news started to filter through. And it dawned on me, well - you know - that's where I work, that's the bus I would have taken, you know? It's the route I would have taken. And I had a breakdown. I went into - my brain switched off. And Elaine phoned the doctor, and the doctor - I had two weeks in [acute mental health treatment centre]. And I don't know what clicked in, but it took them six months to realise that I had the association of losing Lauren, and not dealing with it, and the possible death and carnage that I wasn't around - something clicked in my mind, brain, and it switched it off. And I spent six months in - Two months - Two, two weeks in the hospital, [acute mental health treatment centre]. And another six months as an outpatient having therapy to get over, over it. I couldn't go on a train, I couldn't do anything. Couldn't - I didn't want to go back to work. And it took till - from July until end of December, for me to get back to normality, and get over that. But they two things together, as a cause of that breakdown. And that's because I didn't deal with Lauren's stillborn as perhaps I should have. I didn't have the network. You know, the man gets on with it, goes back to work, carries on as normal. He's just lost a baby, what difference? You know? You've got to earn a crust. And get back to normality. And that's basically not good, a good thing in any way. And there should be something more for the man as well as the complete network support for the lady, the woman who's just lost that baby. So, there's nothing there for the guy. Should be more for the man, and there should be a lot more for the woman. And that's my story.
Anniversaries of the baby’s due date or birthday were particularly painful. For a long time, Maxine found Thursdays hard as that was the day her baby was born. Christmas and holidays were also difficult. Michelle found it hard when she was with her older children on holiday knowing “there should be another one there”.
 

Lindsay found the first anniversary of her baby’s birth much harder than the day itself.

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Age at interview: 35
Sex: Female
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And then it got to his birthday, and I thought I was doing really well. I'd kind of expected that I would be a mess for like the week up to it. And I was like 'no, I'm doing really well'. It turned out to be a Saturday, and we were going to just have like a family day. Take [my son] out, have a easy, happy day. And it got to Friday night, I think, and I was thinking 'oh, I'm still doing really well' [laugh]. And I'm like not a jelly on the floor. And suddenly it all came crashing down, really. And I couldn't keep myself together. And I think a lot of it had been like the emotions in the build-up to it, and all that was going on currently. But, yeah. It was - Friday night it started. And then Saturday morning, yeah. Again, [my husband] and I dealt with it very differently. And whereas I was just like - for that day [laugh], anything for a happy day. So [my son]  gets up really early, just go with it. You know, I'm not going to struggle putting him back to bed, like whatever. Doesn't want to eat his breakfast? I don't care, this day, sort of thing [laugh] [my husband] did it very differently from that. And I think he woke up really feeling quite angry, in his grief. So that wasn't an easy day at all. And we did eventually get out. But it's very hard, isn't it. Because really what I wanted to do was just not have my breakfast, and cry. [laugh]. But I was sitting next to [my son] at the breakfast table. So you kind of have to put this front on, that you're just having a lovely day, going out to the park [laughing]. Sort of thing. 

And we did end up sort of pulling it together and having a day out. And then the next day it was kind of all done with. It was almost like 'oh, well now it's just Sunday and it's just another day without him'. So the grief didn't continue on after that. But it was almost worse than the actual event. I think because at the event, when I gave birth to him, there was so much shock and so much medical intervention, and so busy - you kind of didn't really process at that time what was happening. And then that processing has, is continuing to happen. Whereas on his birthday, it was almost like you lived it again, but without the cushion of people in and out all the time, and the shock. And, you know. It was - you were just left to deal with it. Which, yeah, it was kind of harder, that first year anniversary, than his actual birth day.
Parents often found it very difficult returning to hospitals. Carly found being in hospital brought the memories and grief back and the smell of the hospital was particularly painful.
 

When Michelle had her first period it triggered a physical memory of her loss.

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Michelle: Sometimes it's helpful to be told that when you have a period after you've had a miscarriage, how the smells can trigger. So, no one told me that. So, the first time I had a period, I sat on the loo - the smells were just exactly the same as the day that I gave birth to Arthur. 

Iain: Mmm.

Michelle: And in some ways that was really comforting, because it was a memory of 'no wonder it hurts, because I gave birth to a baby' memory.

Iain: Mmm.

Michelle: But the other thing was actually quite shocking.

Iain: Mmm.

Michelle: Because it just took me back there, like in an instant. Put my knickers down, pfft, I'm there. So, to have things like that said to you. That you know, when you have a period, you'll have mixed emotions, but just to be aware the smell was very similar. Really simple to say. 
Questions such as “Where’s your little one?” after the birth or “Have you got children?” often triggered strong emotions. Pregnancy announcements or being around babies and small children were often difficult for some parents too. Some parents described avoiding events where people might ask if they had children such as weddings. Sharon described how she was “not close to people with children, because I try and lead my life where there can't be any gaps for children”.
 

Carly really appreciated it when people were sensitive about telling her they were pregnant.

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Age at interview: 30
Sex: Female
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Some people were very sensitive toward our situation, when they found out they were pregnant. Obviously we're all late twenties, early thirties, all the people we hang around with, so everyone's having kids. And quite a few people found out they were pregnant, and some people were really sensitive, and came over and they would sit us down and say, you know, "This is going to be hard, but we wanted to tell you ourselves." And some people weren't so sensitive. And I found that really tough, you know, when people were insensitive towards what had happened.

I still struggle like with that now. I don't like pregnancy announcements when it comes from nowhere. You know, like I like - I like to be alone, when I find out. Because sometimes my reaction might be to burst into tears.

So, telling me like one on one is - it's better than, you know, finding out another way.

I had Facebook, and I had to delete everybody who was pregnant. Or had just had a baby. Or was a grandmother who'd just had a grandkid. Like I just had to get rid of it all, because I couldn't - I just couldn't cope with having it pop up, like unexpectedly on me. It just felt like someone was kicking me in the stomach, whenever I'd hear about - you know - someone having a baby. And all I could think was why my baby? You know? Why is everybody else having a baby, but my baby died? Like it, it just felt so cruel. And just unfair. It still feels like that now. Like I still feel like it, like it's unfair. But I've come to terms with it a bit more. But in the early days, that was rough. I didn't like going out. Just I didn't know if I'd bump into someone who was pregnant, or see someone with a newborn. Boys were not as bad, but girls I couldn't - couldn't deal with it at all. 

So I sort of - I lost a lot of confidence, even just going out. Like going out anywhere was like a chore. Like at first I needed someone with me all the time. I just didn't want to be alone. So it took quite a long time like for me to build up the confidence even just to go out. Even going to the GP was tough at first. But eventually it got better. I'm still not that - . I don't think I'm back to a hundred percent where I was before she died. 

Like I'm not keen on big crowds. And I find it easier to be around people who already know. 
 

Sharon’s husband found it hard when he was asked whether he had children.

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Age at interview: 45
Sex: Female
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So if somebody says to me, "Have you got children?" I say "No." If somebody says that to [my husband], he stops. And, and then he says no. But he used to get upset and say to me, "I am a parent, I'm just not a practising one." And he felt that by saying no, it was denying his children. So he really struggled. And he has really, really struggled with it. 
Coping strategies

Parents found a variety of ways to help them cope with their grief. Some parents found they needed to get away from the house they lived in when they lost their baby. Kirsty felt “We had to move house, once we'd had her because I'd started to have her in that house and I didn't want to stay there”. 

Many parents felt taking time off work after the birth was essential although parents’ entitlements to leave depended on whether or not their baby was live born. Others felt the need to get back to work and be “busy, busy, busy, busy”. Sam found it helpful to always take the week off work of her baby’s birthday to spend time on her own.
 

Asun appreciated her maternity leave as it gave her time to heal and meant she didn’t have to worry about having a long period of sick leave on her CV.

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But at least he gave me - he was born naturally. Which - He was born alive, so we have time together.

And he's given me this time off, as well to recover. So he has been kind to Mummy. Yeah. 

How do you think it would have been without that maternity leave?

[Sigh] I don't know. I don't know. Because. The thing is, it [sigh]. Being off sick for a long time, it doesn't look good on your CV. So it would have been more difficult. I don't know if I would be off now. Because I'm taking six months. 

I'm back in July. And not only that, of course it's just that I guess the healing process you need to go through is - it's pressure, somehow. Because you have, you have in the back of your mind, 'oh, I must get back to work'. So I guess you can’t fully - you can’t take it on your own time, I guess. And I think it's not fair. Because for me it would have been the same. But if he had been born dead, I wouldn't have had maternity leave. And it would have been a matter of three hours. Because he was born quarter to ten. If he had been born after midnight, I would have had maternity leave because he was twenty four weeks. But for me, those three hours - they don't make any difference. So for me, it would have been the same. 

But it would have meant I wouldn't have had the time to heal or recover, or started to come to terms with what happened in my own time, and without pressure there. So I want to think it was him, who gave me the time. Because he did. Yeah, because he - if he had been born after midnight, he was - he would have been twenty four weeks already, and they will have had to resuscitate him, or try to. And that would have been a very different picture for me, as well. Because I didn't want him to suffer.
 

Kerry went back to work after three days. Working long nights was her way of coping.

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Age at interview: 47
Sex: Female
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So I was booked off three weeks. I went back after three days. And I was working long nights, because I was working for a partner who was really busy. That stage. So I was working until eleven at night because I had no other commitments. And with [partner]'s work, he would work overtime. I actually landed up bleeding, from all of the extra stress of it. But that was - For me, that was just my way of getting through, and coping. I wasn't having to think about what happened. And I just - that's why I think that I blocked so much out.
Some parents felt an overwhelming need to try for another baby very quickly to help cope with their grief after their loss. They talked about needing to fill the “void” in their lives. Becoming pregnant again offered parents hope and something to focus on.
 

Lindsay felt she needed to get pregnant to fill the void in her life.

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Age at interview: 35
Sex: Female
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Like trying for this baby, you know - it was almost like I needed to get pregnant again, in order for the void to be filled, or - like that's how it felt in the hospital. I was almost like in my craziness, bit like 'just get me pregnant again, now - quick, like just do it now' [laugh]. And then like we did [wait] for the twelve week appointment with the consultant, but then it was almost like my life - I don't think I'll ever move on from Henry, but the circumstances of my life can move on. So when you're trying to get pregnant having had a loss, it's like 'yeah, I have [my son] - oh, and then I lost Henry'. You know, and that's kind of where life is. You're kind of stuck in this state of acute grief and loss, and. Like your world is just - there's no flooring to it, you're in freefall. And I felt like I had to have another stage to my life. I couldn't stay there. For me, that wasn't - that wasn't going to sit well [laugh].

Mentally, or any kind of way. And so therefore I needed to get pregnant again, so that there could be some kind of hope at the end of this story. And so that yeah, the focus of my life could shift slightly, even if my grief doesn't. If that makes sense. 
Talking about loss was important to parents, they often felt more support from friends and family who had experienced the loss of a baby or they sought support and friendship with people they met through baby loss support groups. Others found talking upsetting and tried not to talk to other people about it because it upset them.
 

Helen found the only people who really understood her grief were those who had also experienced loss.

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Age at interview: 43
Sex: Female
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Because I think going through something like that - my Mum didn't get it, she'd never lost a baby at that age. My husband tried as far as he could to get it. My sister didn't get it. Nobody got it. The only people who got it, as far as I was concerned at that time, were people who'd been through it, had lost a baby either at term or certainly beyond twenty weeks.

You know, whereas my Mum and my sister and my friends wanted to know - they wanted to help, and they wanted to support, but they didn't know what questions to ask, they didn't know - Well, and also sometimes I didn't want to talk about them. I just wanted them to get it. I wanted them to read my mind. Whereas the women that had been through it, could read my mind because they'd been there, done it. You know? Might be a completely different reason why they lost. But they knew what it was like to be having conversations like that with NHS professionals, which you don't want to be doing.
In the longer term many parents we spoke to found doing something to make a difference for future parents suffering a loss, to thank people for the care they had received and to ensure that their baby hadn’t “died in vain” was a helpful part of their recovery process and kept their baby’s memory alive (TS:21 Moving on while keeping memories alive).
 

Matthew described how fundraising for Sands was the moment he felt he was able to move on.

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I think a big turning point was when we did a 5k fun run, sort of thing. Where we raised money for Sands. I think that must have been 2015. The summer of 2015. So that was - because [son’s name] was about a year old then. So it was about two years later. 

And that to me, I felt for the first time that I could say that something good had come from it. Because we raised about £1,000. So I could finally say, well - Up until that point, it was like that there was nothing, nothing positive to say about the situation. And I think after that, I think after that I felt differently. That was almost like - I was able to move on.

Because up until then it was like I was going out running every couple of days, and the whole reason I was doing it, was sort of always there at the forefront of my mind, and. Kirsty had been in contact with Sands, and we were getting t-shirts, and sort of trying to raise money about it. And so it, it was - it was almost like it was a constant daily reminder about it. And, and that to me - That for me sort of put - it was a moment where I was able to say 'okay, I think I - I think I'm able to, to move on from this'.
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