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Losing a baby at 20-24 weeks of pregnancy

Coming home after losing a baby at 20 to 24 weeks of pregnancy

While parents wanted to get away from the hospital as soon as possible, and start to grieve for their baby at home, leaving their baby behind was difficult

Several parents commented on how difficult the journey home was, knowing they were returning to a quiet and empty house without their baby.
 

Carly described how difficult it was, driving home from the hospital, and leaving her baby behind. Her heart felt broken.

Carly described how difficult it was, driving home from the hospital, and leaving her baby behind. Her heart felt broken.

Age at interview: 30
Sex: Female
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Leaving your baby in the hospital, and actually walking away and getting in the car and driving off, and - like knowing that you've left that baby behind. You know? I just don't think there's much worse things that you can feel, like your heart just feels like it's broken. Like it still feels like that now. Like I still remember sitting in the car, just - I couldn't believe I was leaving the hospital with no baby, and with nothing. After all that, there was nothing - I had nothing, I just had pain. 
 

Before they got home, Mike’s parents had tidied away all the things they had bought for their baby.

Before they got home, Mike’s parents had tidied away all the things they had bought for their baby.

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Mike: We'd obviously - we had a room full of baby stuff that we'd obviously acquired from our friends and family. And things along those lines. So again, that was something afterwards that we just –

Emily: You family were - your parents were great, they just cleared that room out then. Because we had all the cot and everything ready, so.

Mike: Yeah.

Emily: They've got all of that in their garage [laugh]. And we've got lots of stuff in the loft, haven't we. But strangely, again I don't feel sort of sentimental. Those things are just things.

Mike: Yeah, they were never used. It was just, just - obviously hard to - yeah.
sut I - I don't - that sort of - It wasn't that kind of stuff that I'd kind of cling to. I don't know. 
Parents who had older children at home described feeling torn between not wanting to leave their baby and wanting to see their children, especially as they had often been away from them for a long time.
 

Lindsay explained how difficult it was to manage her grief when she went home while trying to behave normally for her son.

Lindsay explained how difficult it was to manage her grief when she went home while trying to behave normally for her son.

Age at interview: 35
Sex: Female
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And that was so weird. It's so weird walking out of hospital with just my Sands memory box, and my Aching Arms bear. Leaving Henry in the chapel of rest there. That was awful. And just, yeah. Leaving, walking alongside the people that have got their babies in their car seats, you know. And it just felt so wrong. It was so - it was just so wrong. The whole thing, you know. And just leaving, empty. Like literally, physically and emotionally empty. And we came home, and it was nice to be home in some respects, to have my own bed and stuff. But I literally had about five seconds of being home, and being like oh my goodness, we've got a half made-up nursery upstairs, what am I going to do with that? Letting it sink in, before [my son] came back and I was back into normal mum mode. 

And I think whilst [my son] has been a fantastic distraction, it has meant that even now, I wouldn't say that I have had an opportunity to really process what's happened. And some of that is my own mental protection, I think. But, yeah. It's very difficult to grieve when you have to appear normal to your child. 
 

Lisa and Matt explained how seeing their older son made coming home easier.

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Lisa and Matt explained how seeing their older son made coming home easier.

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And so you came home. Was [older son’s name] with you when you came home, or?

Matt: No, so just the two of us. My Mum and Dad were still here, looking after [older son’s name]. I forget where we went - must have come straight home. Yeah. So that was - yeah, kind of strange, just in the car. But that really is - it was - I mean, I think through the whole thing we were just so thankful for [older son’s name] at that time. Because we just thought, if we hadn't had [older son’s name] and we were coming home to a house totally empty, with a whole load of baby stuff and whatever that we were going to use, that would have been so much - So we were so thankful. I think, yeah. That was easy - easier for me, in that I saw [older son’s name] a lot more than Lisa did at the time. So, that was - it was kind of a different tension of emotions for you, because you weren't seeing him, but.

Lisa: Yeah, so I think that was adding to the stress of things really, to just see him for like half an hour, forty minutes a day or something. And haven't really been able to pick him up. 

Mmm.

Matt: Mmm.

Lisa: So I think coming home, yeah. It was nice to be - It was like well, if - if this is the situation, I might as well enjoy just yeah, picking him up and bathing him, and doing things that I haven't been able to do for a long time. And I think there was - yeah. So, that was the one thing we were really thankful for. And I think I was thankful for the time that we had with Emmanuel. So it was like those two things that I think were just going through our head. Yeah. In that time. 
Parents often returned to visit their baby at the hospital. They discussed how they made the decision to stop visiting when their baby’s appearance started to change and deteriorate

Physical health after the birth

As well as grieving for their baby, mothers were recovering from the birth. Some felt they were more aware of physical problems because they didn’t have a baby to focus on. Many said they were physically exhausted and felt “bereft” and “panicky” after the birth. 

Even though they had lost their baby, mothers often had the normal physical symptoms of having just given birth. The experience of their breast milk coming in was an extremely painful reminder of the loss of their baby. Vikki Z had loved breastfeeding her older children so found this really hard. Other mothers did not experience their milk coming in, either because it naturally did not happen or because they were given tablets to prevent it. Sharon was pleased to be given the tablets to prevent this after the loss of her third baby.
 

Emily talked about how she felt physically and emotionally when she got home.

Emily talked about how she felt physically and emotionally when she got home.

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Emily: Then it's that awful thing of like you're going home –

Mike: Yeah. Yeah, it didn't feel right.

Emily: You know, you feel really guilty [struggling against tears]. But your Mum and Dad had come here, hadn't they. And they'd done like - done a shop for us, and cleaned the house, and were here for us when we got back, which was really nice. But it is just a very strange feeling, isn't it.

Mike: Yeah. 

Emily: You do feel just bereft. And panicky. I think the first few days I got through it [laugh] drinking whiskey, didn't I. I had to have like a whiskey to take the edge off in the morning. It just felt - And the day after, I - Obviously my body just felt like I'd been hit by a truck. And my boobs were filling up with milk, and all - you know - all those kind of things, which are pretty awful. 

Mike: They were all the sort of normal things you'd expect to be going through, but – 

Emily: - but without, yeah-

Mike: ultimately it was like a lost cause. 

Yeah.

Emily: Yeah, so that was really tough. And it's just, I don't know. Just the strangest feeling. And I just felt so panicky. And we didn't know what to do with ourselves, did we. We kept going for walks. And then as soon as I was out, I wanted to be home again. And then as soon as I was home, I wanted to be out again. I couldn't find peace anywhere, or settle. And I was really struggling to sleep, and it was just such a - I've never really felt grief like it. I've grieved before, but it was just another level, wasn't it. 
 

Asun explained how hard it was when her milk came in after the birth of her baby.

Asun explained how hard it was when her milk came in after the birth of her baby.

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And I remember, it was very hard for me when - after everything happened, and then I was home and - and my milk. Do, do you say ‘came’, or?

Yeah, yeah.

Yeah. And I feel – It. Probably it wasn't paid enough attention to that. Because then you're supposed to be dealing at home with these four – I don’t know - maybe four or five days? And it just reminds you of that baby you're not going to be able to feed. And for me especially hard, because I fed [my son] for twenty months. So you know, it's, it’s - And I think they should give you more – more, more choices, or more - they should pay more attention to that. Because I remember when I was in hospital, all of a sudden, when we knew what was going to happen and stuff. I just thought is it going to happen? Am I going to have? And I went to ask them whether, you know. And the advice was 'don't do anything at all, just leave it, leave it as it is and it will dry up'. But I think - I my understanding is there is medication to - And I think you should be given the choice. You should be - you should be, you know, given not just 'leave it as it is', because it's painful. I mean, physically. But emotionally it's awful, because it just reminds you all the time what, what you're going through. And I think you could be spared that. So from my point of view, I think it would be good if - 

Because it's something they don't - It wasn't really looked after, if you know what I mean. It was just a little bit dismissed. Just 'leave it as it is', and that's it. And I think they should sit down with you and explain, and say what choices you have. Because you, you - First of all, you could have medication. You could - maybe there will be some mothers that would be willing to donate the milk, and that. But nobody - I think I wouldn't have, anyway. 

But maybe some people at that stage will think about that. But on the other hand, it could be a way of healing as well, for someone thinking - you know - I can, I can do something for - in some - somehow.

For my baby, as well. You know, like it hasn't been in vain, or. Or maybe some people want just to leave it as it is. So. But I think more care needs to be taken on that. Because for my - for me, it wasn't. 
Several mothers we talked to experienced very heavy bleeding following the birth of their baby. This was unexpected, and they wished they had known it might happen and was normal. Lisa was not prepared for the large amount of blood she lost. She felt particularly anxious about the idea of returning to the hospital and so was glad when she was told it was normal.
 

Maxine experienced bleeding and her breast milk coming in. These were extremely painful reminders of the loss of her baby.

Maxine experienced bleeding and her breast milk coming in. These were extremely painful reminders of the loss of her baby.

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Maxine: Physically you walk out of the hospital, and you bleed and you clot like you would as a new mum. You, your milk comes in like a new mum. 

But you don't have a baby. So you've got all - And obviously your hormones are all over the place. 

Steve: Mmm.

Maxine: And you have all that to go along with. And I think, you know I said to you since we lost Heidi - as a new mum the first time round with [daughter’s name], you don't notice all that happening, because you've got a baby to focus on. But when you've got time, you notice everything. So you notice how long your clotting goes on for, you notice - you know - every single drop of milk you lose or whatever, and it's - your body is so, so cruel. Because my body thinks it's just had a baby. And it doesn't have a baby.
A few mums had more severe physical symptoms that required medical treatment back in hospital, such as infections or a medical procedure to remove retained placental tissue. Coping with going back to the hospital and being around mothers with newborn babies was very difficult.
 

Lisa and Matt explained how anxious Lisa was at the thought of returning to hospital to check why she was bleeding.

Lisa and Matt explained how anxious Lisa was at the thought of returning to hospital to check why she was bleeding.

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Lisa: And we thought we were going to have to take another trip into hospital. Which I really at that point was dread - like really didn't want that. I didn't want to go back. But thankfully when I phoned them, they were just like, 'no, hold on - phone us if like if it's terrible in however many hours, then come back.' But yeah, so I'm glad we held on there. Because I think that was when I just was like 'oh no, I just can't, I can't go back'. 

But that was the only time when I had any kind of issues really.

Had they prepared you that that might happen, or? Was it a bit of a surprise?

Lisa: I don't think it was necessarily a surprise, because I think it's just - you know, having had [older son’s name], you know what your body's doing a bit more, don't you.

So I don't necessarily think it was a surprise. I don't think they prepared us, but it was just kind of - just one of those situations.

Matt: Yeah, and I think you're just more conscious of these things. Like before, when you've got a baby to look after, you're busy.

Lisa: Yeah, that's true. 

Matt: You're looking after the baby, that's your main focus. But now, you've only got - only got you. You kind of forget what happened with [older son’s name], because you had other things on your mind.

Lisa: And I think you were more paranoid as well, but - because of the infection, that there could be something. 

Matt: Yeah.

Lisa: Being on the kind of blood thinning things. So I think that would also make me more aware of it.

Matt: Mmm.

Lisa: So maybe I was more aware of things. And maybe this happened with [older son’s name] and I had no idea.

Matt: Mmm.

Lisa: Yeah. So. I guess you're more aware of infections and stuff.

Matt: I think there was that - yeah, you're right. I was more conscious of –

Lisa: And you're really hyped up about things.

Matt: Yeah, just because - yeah. Obviously this infection, and you hear about sepsis and everything else, and. Yeah. So I think I was more kind of conscious to make sure that you were alright. 
Communication with the hospital

After the death of a baby, follow-up care and good communication between the hospital and other healthcare staff was important for parents.Some parents felt they were “pretty much left” after they were discharged from hospital. While Asun was contacted by a midwife she felt they were focusing on her physical health when she really needed to talk about her grief.

Waiting for the funeral and investigations

Parents often felt in a state of limbo in the days at home following the birth. There was often a long time before they were able to arrange a funeral or to find out about any investigations into their baby’s death. Some parents we talked to were entitled to maternity or paternity leave from work as their babies were born showing signs of life. Others had to arrange to take sick leave which often added extra stress during a very difficult time.
 

Kirsty and Matthew went away to a cottage for a few days, and felt distressed when she received a reminder about an antenatal appointment that should have been cancelled.

Kirsty and Matthew went away to a cottage for a few days, and felt distressed when she received a reminder about an antenatal appointment that should have been cancelled.

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We decided in that two weeks to rent a little cottage in Wales, take the dog, and just get away. No TV. Sit and watch the sea, on the bench. And that's what we did. And we had a really nice time. The evenings were a bit bleak. Because that's what - when we'd go over what had happened. But actually, it was nice to get away. And we, we didn't have great phone service. And I remember this midwife, had left a voicemail. And she was quite rude. And I'm not one to berate midwives, I think it's a fantastic profession, I think it's a calling. And practicality side, amazing. You know? Could not fault our midwife that night. Could not fault any of the midwives. But I got quite a berated message for missing an appointment, a midwife appointment. So I rang her back, and it was the same woman that had come to my house with pictures of Rebecca. And I had said to here, "You were at my house four days ago." And she tried to say that "Oh, yes." And I could hear her back-pedalling slightly. And she was very apologetic. But that was - again - was something that we didn't need to have. We had letters sent to us from the hospital, 'you've missed this appointment, please reschedule'. So obviously I'd have to ring them and explain what had happened. So it was just being - It was never going to go away, there was nothing to dredge up, but it was just having to explain to people that you shouldn't have to explain anything to. 

Nobody had sent a letter to my doctor. Nobody had done anything about it. Which kind of made it all worse, because then you're thinking 'well, how have they dealt with her? If this hasn't all come together, admin-wise, what are you doing with her?'
 

Loretta described how hard-going it was telling a health visitor her baby had died.

Loretta described how hard-going it was telling a health visitor her baby had died.

Age at interview: 54
Sex: Female
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And thinking of it, one of the other things just come into my mind. I was - it was a good couple of weeks after, I should think. And I got a phone call from the health visitor, who was going to make an arrangement to come round to visit me, to talk about the baby. And I was like, "Well no, I've lost the baby. Have they not told you that?" So obviously that went a bit skewiff, and they hadn't been informed. And that - that again, you know - you're then having to tell somebody that you've lost the baby, was quite hard-going.

Because it - Especially when it someone that should have actually known.
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