Losing a baby at 20-24 weeks of pregnancy

Overview

In this section you can find out about the experiences of parents whose baby died before, during or shortly after birth at 20 to 24 weeks of pregnancy by seeing and hearing parents share their personal stories on film. We talked to 38 parents from across the UK about issues such as finding something was wrong, experiences of giving birth, time with their baby and what their life has been like since their baby died.

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Losing a baby at 20-24 weeks- site preview

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Vikki: And we went in for the scan, got called in. And I laid down, and they put the jelly on my belly, and got the, the scanner out. And then I remember [my husband] seeing the baby on the screen and saying "Oh look, it's all curled up in a ball, it must be really cosy." And then the sonographer couldn't find the heartbeat. And it just - my world just kind of fell apart there and then. And she left the room and said she needed to get a doctor to just confirm it. So the doctor came through. Scanned over, and said, "No, I’m really sorry, there is no heartbeat." And then at that point I knew I'd have to deliver this baby. There was no other way, I would have to deliver the baby.

 

Carly: And it was so sudden, you know. It was one day she was fine, and then she's just dead. There's no - It's like your whole bottom of your world has gone. Like you're in shock, you know. The shock of what happened is almost as bad as the grief, like you just can't seem to comprehend it. You know, your whole world's destroyed in a second. And all them things that you thought you would do, you just - you can't do them anymore.

Kirsty: So I got home, and I also remember Matthew had bought me flowers that day. And I remember running into the kitchen, and he said to me, "Here's a bunch of flowers." And I said, "Thanks, great. Brilliant. Got to go to the toilet." Ran up the stairs to go to the toilet and we didn't have a lock on our bathroom door. [clears throat] Excuse me. And I went to go to the toilet. Felt something very strange. I didn't know what to do. I just did not know what to do. Screamed for Matthew. He came in. And he just took control. Absolute control. I'm generally the one in the relationship that takes that stance. He rang 999. And they were speaking to me, telling me to get into this position and that position, what was going on. And there was no other feeling I had to push, there was no other - that was it. I had that obviously - I now know they were contractions.

I remember feeling really confused, and going "Well, why am I going to deliver the baby?" I just didn't understand at the time. It didn't compute that actually I was having a baby. I think in the back of my mind I thought that they'd be able to put her back in, or. Because she wasn't ready to come out.

We got to the delivery suite. And they had a crash team ready for her. And the room was just full of people. And they were all desperately trying to get her out. They were pushing my stomach. They were telling me to push. And I, and I also remember they kept saying to me, "Bear down. Bear down." I didn't know what that meant. I hadn't been to any antenatal classes yet because we hadn't got that far along. And it was panic, it was just this mass feeling of panic. And then all of a sudden the doctor came to my bedside, she had a stethoscope and she put it to the umbilical cord, and she just said "There's no heartbeat." And then that was it, and the room emptied, everybody left. We were left with a lovely midwife. And I think that's when we let go, I think we knew, we both knew, on the way that this wasn't good. We weren't at that stage yet, where it was all going to be okay. But I think when somebody turns round and says to you, "there's no heartbeat," that's when - that one minute, everything changes.

 

Emily and Mike:

Emily: We had a lovely bereavement nurse that before we left that came to talk to us and went through everything, which is incredible. She was so nice, wasn't she? Because just to explain exactly what would happen.

Emily: I still had to push and everything.

Mike: Yeah.

Emily: Because I said to the bereavement midwife afterwards, I said something like "Gosh, that was awfully hard work - I can't imagine what it's like to really give birth." And she said, "But you did." She said, "You still had to get to -." I think I had to get to six centimetres dilated or something. And she was like, "That's the majority of the hard work, it's just the same, and you did really well. And you were - you know." And again, because she was small, you sort of think you don't, but I still had the awful contractions, I had to do the breathing, and still had to push, and all the - you know - I had to deliver the placenta afterwards. I still had to do exactly the same, it's just that she was small. But I don't think I was ready for that.

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."

 

Michelle and Ian.

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.


It is extremely rare to give birth at this stage of pregnancy, (less than 2 in a 1000 births are born in the UK at 22 or 23 weeks of pregnancy [MBRRACE-UK - UK Perinatal Mortality Surveillance for 2015]. While we know that some babies born at this stage of pregnancy do survive, here we have only talked to parents whose baby died before, during or very shortly after birth. We wanted to talk to parents who experienced the loss of a baby between 20 and 24 weeks of pregnancy because we knew that they fall in between those parents who experience early pregnancy losses and those who experience stillbirth. The death of a baby that is born alive and dies shortly after birth at any stage of pregnancy is referred to by health professionals as a neonatal death. These babies will have their birth and death officially registered whatever stage of pregnancy they are born at. Babies born showing no signs of life before 24 weeks of gestation cannot by law be officially registered as a stillbirth and are referred to as a miscarriage. These babies do not have their birth or death officially registered. We spoke to parents whose baby was born alive and those who were born showing no signs of life so that we could explore similarities and differences in their experiences.

We have done our best with the terminology that we have used by talking to parents, charity representatives and health professionals. The parents we spoke to felt very strongly that the word miscarriage did not describe the lived experience of losing a baby at this stage of pregnancy. However we understand that the terminology we have used may or may not fit with all parents’ views of how to describe their experience.

The MBRRACE-UK Signs of Life Guidance has been developed with healthcare professionals, health policy and health research experts and parent advocates to support staff in providing consistent care at this difficult time. Videos to support this guidance can be found in our Service Improvement section here.

This section is based on research by the University of Leicester in colllaboration with the University of Oxford.

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This is a summary of independent research funded by a National Institute for Health and Care Research (NIHR) Career Development Fellowship award to Lucy Smith (Reference NIHR CDF-2013-06-018 Smith). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

Published: June 2018

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