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Losing a baby at 20-24 weeks of pregnancy

Moving on while keeping memories of the baby alive

Keeping their baby’s memory alive was very important to parents. Deciding how to do this was a very personal choice. Michelle highlighted how important it was to “do what you need to do”. Some parents talked about marking their baby’s birthday or due date in a special way. Parents might visit their baby’s grave or the special place where they had scattered or kept their baby’s ashes.
 

Helen Z and her husband felt it important to mark their baby’s due date and birthday.

Helen Z and her husband felt it important to mark their baby’s due date and birthday.

Age at interview: 37
Sex: Female
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We let off some balloons on his due date. So on his due date I think maybe I was like seven - seven weeks pregnant. So we let off some balloons for him. And then on his actual day that he was born, the 30th of January. So I think a couple of days after he was born, I went on this 4Louis website. And I bought a memory box, in his - in his memory, for someone else to have.

And I think every year - I did again this year, I bought a memory box. And every year, I'm going to buy a memory box on his birthday. In his name, for someone else. 
 

Michelle felt that validating your experience was important and there was no right way of doing it.

Michelle felt that validating your experience was important and there was no right way of doing it.

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Michelle: I think for me it's about validating your experience, however that feels right for you.

Iain: Mmm.

Michelle: And there is no right or wrong.

Iain: Mmm.

Michelle: I think grief is a very unique experience. It comes at different stages, so. You know, if it - if it doesn't hit you on the bum in three months, it might in a year, and that's okay. To be really kind to yourself around the due date, and around anniversaries. And the build-up to those can sometimes be worse than when you get there.

Iain: Mmm.

Michelle: Definitely to go to support groups. Or to find online forums. But at the stage when you feel ready. So, some people feel ready immediately, some people don't want to do that. So really I think for me it's just about knowing it's unique, knowing that whatever you choose is okay. And that whatever stage of loss you've gone through, you have the right to validate that as a life. And no one else is going to probably give you that right, so you've got to find that right for yourself. And, yeah. To do what needs to be done for yourself. And is so individual. Some people want to mark the baby, name the baby - some people don't. And not to feel guilty if you choose something different to what now is expected.

Michelle: You know, I think - you know - sometimes we go the other way, and say you have to light a candle, you have to - you know - name the child, you have to plant the tree, you have to put an extra decoration on the Christmas tree.

Iain: Mmm.

Michelle: And it's like well no, you don't, actually. If for you, the best thing to do is just lay down and walk away, that's - that's a right as well, so. 

Yes, there's a place to offer empathy, and a place to be heard, but also it really, really is an individual thing. So I don't have like anything to say that says, you know, do what we did, or anything like that. It's just more about do what you need to do to get through it.
Talking about the baby

Talking about the baby was a common way that parents felt kept their baby’s memory alive. Most parents wanted to keep talking about their baby to friends and family, although they often found this was difficult. After a few months some found that their friends and family no longer talked about the baby and their loss. They often felt this was because people were embarrassed and afraid of upsetting them or had forgotten about it. Similarly some parents explained that they didn’t talk about their baby with certain friends and family members because they didn’t want to make them feel uncomfortable. Some said they found that talking to other parents who had lost a baby at a support group really helped as they “get it”.
 

Kirsty strongly felt she often didn’t speak in full detail about her loss because she didn’t want to upset friends and family.

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Kirsty strongly felt she often didn’t speak in full detail about her loss because she didn’t want to upset friends and family.

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I would say that even though you didn't manage to bring anybody home, they existed. And you should remember them. And you should talk about them. And do what's right for you. As I say, we remember our Rebecca at Christmas, we remember her on our anniversary. And we have our tree. I would certainly say that the hardest thing - and they will have gone through it - is to - is to not take them home.

And yeah, I just think just remember them. Just - They're not something to be swept under the carpet. And if I'm, if I'm honest - reflecting back, I made far too many people feel comfortable. For their sake. And I didn't want to upset them. So I never really spoke in full detail about it.

I never - I never really went into what happened, particularly. And as I say, I think now, looking back, it didn't do us any favours, putting on this brave face. Because people just knew that we were going to get up and get on with it. And there are some times when I don't want to get up and get on with it. But that's what's expected of me, because that's what we did from day one.
Doing something to make a difference

Many parents we spoke to were very passionate to do 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”. Maxine explained, “we're very realistic, we can't stop it happening… but we can try and learn from our experience, to help other people… actually, our story is really powerful to people”. 

Many parents described fund-raising for charities that they had received help and support from during their loss such as Sands and the Miscarriage Association. Some raised funds for specific things that had helped them such as memory boxes or facilities in the local bereavement suite. Sharon raised money for a double bed for her local bereavement suite after the loss of her second baby and then sadly made use of it when she lost her third baby.
 

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

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'.
Some parents helped emotionally support other parents who had experienced loss, either by setting up a bereavement group or volunteering for an established support group. Others felt this would be something they would like to do when they were ready.
 

Loretta really appreciated the support of other bereaved parents and it motivated her to become a telephone contact for the Miscarriage Association.

Loretta really appreciated the support of other bereaved parents and it motivated her to become a telephone contact for the Miscarriage Association.

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. 

Mmm. Yeah.

Yeah.

So was that in someone's house, or?

Yes. Yeah, we used to take turns. Went to her house. When she moved, I took over for a while. And now I'm just a telephone contact. Because everybody then went on to have children.

But you're still involved?

Yeah. Yeah, I'm still a telephone contact for the Miscarriage Association. 

Right. And what does that involve?

If somebody's rung up the main office, and they'll give them a local number of somebody that they can talk to. Mmm.

Okay. And do you get regular calls?

Not as many now, no. Because I think where you've got the internet, you can find out a lot more on there. You know, the Miscarriage Association has got their website. And there's stuff on there that - you know - can help you. 

Mmm. Mmm.

So I've not had a call for quite a while.
 

Michelle became a doula to support other mothers who were going through a similar experience.

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Michelle became a doula to support other mothers who were going through a similar experience.

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But yeah, knowing that emotional support in those moments can just make the birth a really positive experience, and you're still left without a baby alive at the end. But you aren't then getting over a traumatic experience as well. And you know, those that I've supported have had really beautiful, actually quite healing, births. When maybe they've had traumatic births before.

So I really want to try and raise awareness, and somehow get this to be more of a norm. But neither of us are very PR people, are we, we're more just - we just get on and support people, so. 

I don't know if I am The Voice [laughing]. But it's definitely something that I am really passionate about, to try and get that message out there somehow. Yeah. So. And I do - I do, you know - When I'm running the support group, I do have those moments where I think okay, am I that woman that can't let go, whose identity is all built round Arthur dying? But I don't think I am. I think yes, that's organically grown, and I'm supporting people. But actually the positive of it is that I've got a lot of wisdom, and I've heard a lot of stories.

And actually it's not all about my story, this is about a lot of women coming through those doors who are hurting, who've been told really crass things. You know, been told they should be getting over it after three weeks. And don't get maternity leave, don't get maternity pay, because their baby was born two days before the cut-off point. You know? Things like that, that just make me so angry. And I know care has improved since we had Arthur, but I'm not sure in the gynae area those twenty to twenty four weeks has improved to the right standard that it has maybe for stillbirth.

So, yeah. Feel a bit - still a bit of advocate for that, really.
Several of the parents we spoke to felt that contributing to this website was another way of helping. As Emily said, “If it makes any other parents' experience slightly less harrowing, then I'm all for it.” One of the reasons Sarah participated was to let parents know that there was good care for people suffering a loss as, after attending a Sands meeting, “I knew that lots of other people had had much worse experiences than me and I didn't want everyone to think that that's how it had to be.”
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