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Losing a baby at 20-24 weeks of pregnancy

This isn’t a miscarriage – losing a baby at 20 to 24 weeks of pregnancy

Babies born showing no signs of life before 24 weeks of gestation cannot by law be officially registered as a stillbirth (for more information see Overview) and are referred to as a miscarriage. The effects of this legal limit impacted on parents in both practical and emotional ways. The parents that we spoke to felt extremely strongly that the word ‘miscarriage’ was completely inappropriate and did not in any way describe their lived experience. The reality of losing a baby after 20 weeks was very different to what they imagined, or had experienced, an earlier miscarriage as being. They reflected on the pain of labour and giving birth to a “formed, tiny, perfect” baby which felt more than a miscarriage. Many parents had held their baby in their arms, sung to them, washed and dressed them and had a funeral for them. Maxine felt very strongly that “we've gone through everything that you would for a normal baby”.
 

Mike and Emily were anxious about how their baby might look, but she was like a very tiny baby.

Mike and Emily were anxious about how their baby might look, but she was like a very tiny baby.

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Mike: I remember the nurse saying that she looked great when she was born. And she was, she was - she was exactly what you'd expect a baby to look like, but just smaller, like everything was there in proportion, nothing –

Emily: Perfectly formed, yeah.

Mike: Like I mean, it wasn't like a - like a fetus, you know, they're slightly still developing. Like she, she was ready. All she was going to do from there was get bigger.

Emily: Mmm.

Mike: She was perfectly formed. So, to – 

Emily: I think we were even shocked at that. Because I – 

Mike: Yeah.

Emily: -that was one of the things I was really anxious about, it's like, what is she going to look like? Is it going to be disgusting?

Mike: Fingernails, and little things like that, as well. Just these tiny details that - to me, that's - that wasn't a miscarriage. In no way, shape or form. Medically it was. But I don't, I don't think it was. 

Emily: Because I - yeah, we were worried of what she'd look - I didn't know if she'd still look sort of like blobby, or - you know, be squid-, I don’t know. I just didn't know what to expect at all. So, I, we were both surprised, weren't we?

Mike: Yeah.

Emily: And when we've shown people photos, they're like "Oh, my goodness - she is a, like just a tiny little baby." So, yeah. I think that terminology - I don't know how you’d, on earth you'd go around changing it. But I do feel like it doesn't do justice to what we went through. 
 

Kelly hated the term miscarriage.

Kelly hated the term miscarriage.

Age at interview: 39
Sex: Female
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I found that really, really hard. Because Grace was born at twenty three weeks. And to me, she looked like a baby. And it upset me for them to call her like a miscarriage. Or like the - what they used as the terminology. 

Because to me, I've heard of babies surviving at twenty three weeks. And continuing. I just can't understand why they use that terminology. 

I don't - yeah. I, the one I lost at fifteen weeks, I would say yes, a miscarriage. But not the one I lost at twenty three weeks. I hated the terminology, it really upset me. 

I think there needs to be some other terminology used.
Many of the parents we spoke to were treated as if they were having a baby not a miscarriage by hospital staff caring for them. They really appreciated this level of care. Sarah felt “it was nice that they were treating him as a baby, a child that we had lost, rather than a miscarriage and I think these are all the kind of things that made a massive difference to how we dealt with it afterwards.” Some mothers talked about how using the term ‘miscarriage’ had failed to prepare them for the experience of going through labour, giving birth, seeing and spending time with their baby . Camille felt it would have helped if “instead of using that horrible word 'miscarriage', they should have said ‘you're about to have a baby’”.
 

Courtney felt she wasn’t prepared for giving birth to her son because everyone told her she was having a miscarriage.

Courtney felt she wasn’t prepared for giving birth to her son because everyone told her she was having a miscarriage.

Age at interview: 30
Sex: Female
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And then labour happened. And, you know? The fact that I had to go through the whole process of giving birth and everything, actually like - I just didn't feel like that I was going to have to have him. I didn't realise how big he was going to be, and how formed he was. You know? I thought like - Because they kept saying to me, "Oh, it's a miscarriage. It's a miscarriage." Because obviously before twenty four weeks, they don't count it as a live baby.

But so in my head I was like 'it's not going to be like this, it's going to be like, like just blood or whatever'. But you know, I had to full on give birth, and. And they had to take the baby out. And then I had to give birth to the placenta. 
 

Maxine felt an early miscarriage was very different to giving birth and holding her baby born at 21 weeks of pregnancy.

Maxine felt an early miscarriage was very different to giving birth and holding her baby born at 21 weeks of pregnancy.

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And I think there's those two groups of people who talk about what's happened, the people who - you know - are very - have a very early miscarriage, before twelve weeks. Or people who will have a proper baby to hold, and to - you know - even if it is stillborn. And then there's that people in the middle, who - I didn't have a clue what I'd have to do. I kind of thought I might go to the toilet and the baby would go. And it, it doesn't work like that.
Parents felt losing a baby at any stage of pregnancy was devastating but that more consideration should be given to the impact of losing a baby so close to the 24 weeks cut off when the death would be considered a stillbirth and legally registered. Some parents we spoke to had experienced a miscarriage early in a different pregnancy and then also lost a baby between 20 and 24 weeks, and felt the “trauma was a lot different”. While extremely upset by their experiences of loss in early pregnancy, feeling a baby move or seeing them on an ultrasound scan and then giving birth to a formed baby rather than heavy bleeding made the experience very different. Some parents also felt that there should not be different rules based on whether or not a baby shows signs of life. Kelly felt that knowing that some babies who are born at 22 and 23 weeks of pregnancy survive made the word miscarriage even harder to accept, “I've heard of babies surviving at twenty three weeks... I just can't understand why they use that terminology.”
 

Alison described the loss of her son at 21 weeks of pregnancy compared to an earlier loss at 12 weeks.

Alison described the loss of her son at 21 weeks of pregnancy compared to an earlier loss at 12 weeks.

Age at interview: 30
Sex: Female
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I think [sigh]. It was because he was - The later pregnancy, you've felt them. I'd felt him move. He - Everybody knew. And a lot of people, like a lot of very close friends knew about my first pregnancy, but. Yeah. It was kind of like that was our accepted fact, that this was it. Whereas you - although we hadn't expected to have a miscarriage, it's - that's more common. And so [sigh] after a little while, it was kind of like 'right okay, well this is a normal thing that happens'. With the second pregnancy, it was like, 'well this is what our life is going to be', and then that was snatched away. And we'd bonded. And seen him on the ultrasound, so.

With the first baby, we'd never seen - I think no, actually, I think I'd been in at seven weeks and had seen a tiny little - tiny little dot with the first pregnancy. But it wasn't kind of seeing a baby on there. So it was - And then the actual process of giving birth, the fact that you did actually - I did give birth to him. And I don't - I think a lot of people just don't - they don't either think or realise that that is something that you go through. And so that, that all still happened. Yeah. And I still - I mean, this all quite hard to talk about with anybody that I know. 
Parents talked about how using the word ‘miscarriage’ to refer to their loss made them feel as if they were “making a mountain out of a molehill” and that it prevented friends and family fully understanding what they had been through. David  felt that calling the loss of his baby a miscarriage meant that a lot of people couldn’t “read between the lines and experience the pain” he and his wife Elaine were feeling.
 

Matthew felt the term miscarriage prevented people understanding what they’d been through.

Matthew felt the term miscarriage prevented people understanding what they’d been through.

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I think it's almost like because she hadn't reached twenty four weeks, it wasn't legitimate, it was - Because it was still termed as a miscarriage. 

And because there hadn't been a birth certificate or a death certificate, it's almost like everyone - it's almost like it was minimised and wasn't that big of a deal. 

Not just for the people who were involved at the hospital, but for like families as well. They didn't really seem to grasp what had happened, or how horrific it had been. Or that you know, a few days here and there shouldn't really make much difference. I mean, I think if she'd have been born at twenty four weeks, I think Kirsty would have been able to have like some maternity leave. Which I'm sure would have really helped her. She'd have very much appreciated that extra time off work. As it was, she was - she was back there herself after a couple of weeks. So. I don't know. I'm sure it wouldn't have helped the loss or the grief to have had the paperwork, but I think perhaps how other people dealt with it, they might have been a bit more sympathetic, I guess is the word. A bit more understanding, that we'd been through something quite, quite bad.
Babies born before 24 weeks of pregnancy showing no signs of life do not have their birth and death officially registered. Many parents found this very difficult, as if their baby’s life was not counted or validated.
 

Carly felt that having a birth and death certificate would give her baby more dignity and validate her grief.

Carly felt that having a birth and death certificate would give her baby more dignity and validate her grief.

Age at interview: 30
Sex: Female
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So it's just like - it's just like insult to injury, isn't it. Same with the birth certificate. We got a little - was classed as a certificate of life. But really, it's just a printed out bit of paper that the hospital gives you, that's not formal, it's not recognised, and it's not official. Like a birth and death certificate, I think - they just give your baby that bit of, bit more dignity. Rather than - You wouldn't feel that you'd need to explain it so much, or like how you're feeling. It's like a - And it's almost like a recognition of your grief. Like if you've got that birth and death certificate, like they were here and then they died. And like the way you're feeling is valid. Whereas it doesn't feel as valid if you don't have those. The one thing that's like really important to me, which I keep, in her memory box - like I keep all her stuff in, but the most important thing in there is her little wristband. They put the wristband on her. You know, saying 'baby Josephine'. 
 

Kirsty found it particularly painful not receiving a birth or death certificate. Her baby was born two days before the official 24 weeks.

Kirsty found it particularly painful not receiving a birth or death certificate. Her baby was born two days before the official 24 weeks.

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And then I remember saying to the midwife, "What do we do about a death certificate? What do I have to do about all of that?" 

And she said, "It's okay, it'll all be explained in the leaflets that we're going to give you." And then the realisation hit me, that I knew somewhere in the back of my mind that it had to be twenty four weeks. And I said, "I've just had a miscarriage, haven't I?" And she says, "No, you've just had a baby." That is what I would say to anybody now that talks to me about late - late miscarriage. Or, what we had that night was a baby. We got to cuddle her, we got to put clothes on her. And that is not a miscarriage. And we did have a couple of family members refer to her as miscarriages. And I put - I said, "Please don't refer to her like that again. We had a baby." And I don't know if it helped particularly. A lot of our experience with Rebecca, I can see from two angles. I know why it was done. And I know why it would be seemingly to help us, but also, did it really? And when I'd asked about the birth certificate, we got given like a fake birth certificate. And I know that some people would probably love that. And I know that that was given to us because they wanted us to know that they recognised we'd just had a baby. 

I don't want a fake birth certificate. And I think out of the whole experience, my hang-up has been the birth certificate. She was two days short. They had a crash team there. We had a baby, but she'll never be recognised by UK law. She'll never - she just didn't exist. And people treat you differently. People do treat it like you've had a miscarriage. And they'll tell you about their experiences of having a miscarriage. And I'm not going to take anybody's pain away, and say that my pain was worse than anybody else's. Because it's a very individual thing. But it's just a different experience. And I don't think you can put them in the same box. And having a loss of a baby at fewer weeks and having one where you have got a baby, they are different experiences. Same kind of pain, but different experiences. But I was all of a sudden in this other box that I didn't want to be in.
Many parents we spoke to found it extremely difficult when their baby was born so near to the legal definition of a stillbirth (24 weeks of pregnancy). Their babies were born a matter of a few weeks, days or even hours before the official time. While parents recognised the need to have some sort of legal cut-off they felt that the definition should be rethought. Nesta’s baby was born at 23 weeks and 6 days, she found it very strange to find out about the threshold, “if there's a baby and there's a coffin, then there's a person, but at the same time there’s a reason there has to be a threshold”. Michelle said people needed to realise “how painful it is to get so close to that line, and not get to that line… and actually offer some sort of support and practical help on that.” However whatever legal cut-off is used, there will be hurt for those who feel they and their babies are excluded from registration.
 

Emily and Mike felt the word stillbirth much better described their experience than miscarriage.

Emily and Mike felt the word stillbirth much better described their experience than miscarriage.

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Mike: I, I don't like - Miscarriage is obviously in common usage, everyone uses it. If you're pregnant and you don't have a baby, it's a miscarriage as well. But I think from like a - There has to be some better way of like categorising different stages of what a miscarriage can consist of. 

Emily: I feel she's more under the stillbirth bracket. Because I gave birth, and she was still [laugh]. You know? So I sort of feel like that actually fits the description much better.

Mike: Yeah.

Emily: I quite often say I had a stillborn daughter. Because I did. I gave birth, and she wasn't alive.

Mike: Yeah. 

Emily: So actually, I think she falls under that bracket. I don't know why at twenty four weeks it is considered a stillbirth, I don't know. There's obviously a reason behind it, but I - I think if you have to go through a birth, and the baby doesn't survive, to me that is what –

Mike: Yeah. I mean, the different - yeah. 

Emily: Because I think sometimes when I'm trying to give someone a kind of quick version of it, saying I had a miscarriage just - again - brings back that sitting on the loo and bleeding. It doesn't tell people what we went through. Whereas if you say stillborn, people are like "Oh." And they get it. You know?
 

Carly described how losing a baby before 24 weeks made her loss feel less significant.

Carly described how losing a baby before 24 weeks made her loss feel less significant.

Age at interview: 30
Sex: Female
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I do find it hard, just with - When she was born, specifically. Because you're not categorised as a stillbirth mother, I find that hard. I feel sometimes almost like I'm a fraud. Like my baby didn't matter as much. Even though to me, she does. But to other people, they might just see it as 'oh well, it's a miscarriage, like how are you so devastated, you know, why aren't you over it yet, why is it - why is it that you can't move on?' But like to me, like - like my daughter died, I can never move on from that. Like I'm always going to be heartbroken. There's no good that comes out of a baby dying. Like it's not like when someone's old or ill, and they've had a fully life. Like when a baby dies, it's just - it's always sad forever, forever. I'll never ever feel okay about it. And I mean, I'm a lot better. And I can talk about it. And you know, I can function okay now. But I'll never be - you know - happy about what's happened. I'm always going to feel devastated over it.

When I'm 90, I'll feel like that.

And the difference of if she'd been born after twenty four weeks? So the maternity leave, and -

Yes. 

- birth and death certificates?

Yes. So important.

Yeah. Which - Are there some of those that are really?

Well, it just makes you feel like you're less significant than a mother whose baby had been born dead a couple of days later, and that's just not the case. You know, my baby existed, and she was here. And I laboured and delivered her. And I held her. And I had a funeral for her. You know, she was a real person. Like I felt her move. And, I - I feel like any woman that goes through that deserves the same recognition as a woman who has a baby a little later on. I don't think that you should be categorised. It's almost like you're being punished, on top of all your heartbreak. It feels like a punishment. You know, like you're pushed down into a subcategory of loss, and your grief should be as deep as somebody else's. And that's not how it is. 

You know? 'Mother Carly' on her little band. That's like the only real medical documented proof that I have that she was here. And so that band's so precious now, because I don't have anything else. Except her - I've got like a little document, like I got with her ashes. But those are the only official things that I have of her. 
As well as the emotional impact of being born showing no signs of life before this 24 week limit, there were also practical implications. Being this wrong side of the limit had a major impact on parents access to maternity and paternity pay and parental leave as well as other financial aid. Sarah found it “was really rubbing salt in the wound” when she had to go back and pay for dental treatment that she was no longer exempt from because she lost her baby before 24 weeks of pregnancy.
 

Elaine regretted not hanging on an extra day before giving birth to her baby as her baby may then have been registered as a stillbirth.

Elaine regretted not hanging on an extra day before giving birth to her baby as her baby may then have been registered as a stillbirth.

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Once I delivered her - it was twenty three weeks and six days. And I regret to this day that I hadn't hung on to that Tuesday, and I could have a birth certificate and death certificate. And I really wish - There was no - They said I could have carried her for a few weeks. And they said infection can then set in.

But because I was so - in such a like, such a state - I wish somebody had explained to me, "Look, if you just - you know. If you choose to wait another day, you can have a birth certificate and a death certificate." And it wasn't until, I don't know how long after, that I realised - I tell people I was twenty four weeks. Because she wasn't a miscarriage, she was stillborn. She was a baby. She was formed. She was little, she was tiny, but she was perfect.
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