Losing a baby at 20-24 weeks of pregnancy

Experiences when extremely premature birth is likely

For about half of the parents we spoke to, the pregnancy ended due to premature labour or the waters round the baby breaking very early. For some, this was a long process with repeated visits or stays in hospital. For others it was a very quick process, and they gave birth within a few hours of their first symptoms.

Most of these women’s pregnancies had progressed well in the early stages, so premature labour came as a shock. Lindsay remembered feeling fine until after her 20 week scan. But others, such as Courtney and Asun, had experienced extreme sickness throughout their pregnancy.

Courtney felt sick throughout her pregnancy and the first day she felt “semi-ok” was when her premature labour started.

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Age at interview: 30
Sex: Female
I get very sick. I was very sick in the pregnancy. The sickness came to at six weeks, and just basically didn't go, the whole time up until I lost him.

And, and I used to complain because people used to say "Oh, morning sickness." And I'd be like "There's nothing called morning sickness, it's called 24/7 sickness." [Laugh].

And, and that's just the way it is. And it's horrible. But, but I remember the first day that I felt semi-okay was the day that we lost him. I remember waking up and thinking 'today I feel like I can do stuff'. And then obviously that's what happened.
Sudden symptoms

When mothers started to experience symptoms varied widely. For some, the symptoms came on very suddenly and they gave birth extremely quickly. Kirsty’s pregnancy had progressed well and so it was completely unexpected when after an exercise class she went to the toilet and felt she was about to give birth. Some mothers had just a few hours in hospital before giving birth, often waiting for or receiving treatment to try to delay the birth.

Kirsty was taken to hospital by ambulance when she suddenly started to give birth.

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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. 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. And looked down, and there was these two little legs hanging. So, in my panic, I didn't - 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 was told at the hospital I was having contractions. But that was it. So I had this baby that was half in, half out. The ambulance came. And they didn't know how to put me into the ambulance. And I remember being really awkward. I couldn't sit down. I didn't want to lay down. So I ended up hugging a chair, in the ambulance, on my knees. And I remember them saying to me, "We're going to the delivery ward. We're going to the labour ward." And that really confused me.

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. Everything changes. The room emptied. The midwife left us alone. We had a good cry. But I still had a job to do. I had to get this baby out. 

Courtney was at work when she realised she might be losing her baby and had a long journey to the hospital.

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Age at interview: 30
Sex: Female
So I actually got on the tube, and the train. And the whole - did the whole journey, knowing that I’d probably have lost the baby. That was really tough.

And then rang up my husband, and was just like, "You need to meet me at the local hospital." 

Went to the local hospital, and they said that the scan unit had closed, so they couldn't scan me. Which I thought was - At the time, I didn't think anything of it. Now, I think it's disgusting. You know? And they said that I'd have to wait until it opened at seven o'clock in the morning, and they were going to keep me in. And I had no bleeding. And they'd had a look and said "It's incompetent cervix. You just need to be stitched up." So, once we scan you, you can see how far back the hole goes, so how much we need to stitch. And I was like, "Fine." 

So, went the whole night, terrified. Absolutely terrified. The next morning came, seven o'clock - because obviously we didn't sleep, at all. 

Seven o'clock came. And, I was fully expecting that I'd be taken in to have a scan, to have the scan straight away.

And they were saying that the appointments that had been booked that day take priority. 

So I was left there, waiting. And then it came to eleven o'clock, and I was still waiting, to try and see to get someone to have this scan, so I could go into surgery. Because in my head, once I had the surgery, everything would be fine, because it'd just be stitched up. And then you could go on with it. Eleven o'clock came. Still didn't have a scan. Twelve o'clock came, still didn't have a scan. Also, not - I'm not, was angry with them or getting annoyed, because - you know - this is the first time that I'm going through this, I'm totally going by their judgement and everything that they're doing, and understanding that they know best. One o'clock came. And I - It's the first time that I said to my husband to, you know, "Go home. All I'm doing is waiting for a scan. Go home. Get some bits for us, and then come back." Half one, I started bleeding. And they come in, and they tell me - didn't even - it wasn't even bleeding a lot. It was like spotting.

And they come in and they tell me that there's nothing they can do, that I'm going to have to let the baby pass.

Without the scan?

Without the scan. The whole time I was there, I never got a scan. I got, I got a Doppler, which allowed the heartbeat. And, and the heartbeat was really strong. There was nothing wrong with him at all. 

Like the whole time, his heart was really strong. He never had any issues with him, it was - it was my cervix that was the issue, we just needed to close it up. 

Kamie described just having a bit of a stomach ache before her waters broke and she was rushed to hospital to give birth.

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I just had a bit of like stomach ache. I didn't feel right. Couldn't get in at the doctors. Couldn't get - I rang the midwife up, she said nothing was wrong with me. So I got in at the doctors like the following Monday. But it was too late by then. I'd gone into town, and to drop my daughter off at school. I felt even worse, so I went to the pub. I rang the hospital up, and just said, "Look, I really need to see somebody, I don't feel right." I went to the toilet, and my waters went down, down the pub toilet. So I rang my Mum and Dad up, and they come and got me. Took me straight to [local hospital]. They said my cervix was short. They went to book me in to go to [specialist hospital], to see a specialist about putting a stitch in. But as [laugh] - They'd gone out, I went to the toilet, and her foot fell out of me on the toilet. So obviously labour - that stomach ache, it was labour, and things like that. And that was it then.
Gradual symptoms

For other mothers, there was a long period of days or weeks from the first symptoms and an idea that something was wrong until they finally gave birth. The symptoms mothers experienced included bleeding, loss of fluid around the baby or pains around their abdomen. Some mothers stayed in hospital while others were admitted and discharged, sometimes repeatedly. Some felt their symptoms were not taken seriously. Kamie had already experienced the loss of a baby at 20 weeks. So when she had the same symptoms with her next pregnancy she felt upset that people were “fobbing you off all the time, like I don't ring a midwife for no reason”.

Emily and Mike were in and out of hospital with bleeding for 7 weeks. Although they felt something was wrong, they didn’t feel they were taken seriously.

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Emily: And I think we were quite aware at that point that we sort of felt something was wrong, but it felt like we weren't being taken seriously, perhaps. Quite often when I would turn up at A&E, they'd sort of say - you know - I'd say "I'm bleeding." And they'd sort of be like "Yeah, yeah." And then send me off to do a urine sample, which would obviously just be bright red. And then I'd bring that back, and they'd be like "Oh, you are." You know? It was almost like – 

Mike: That was very frustrating, was every time, and we went to the hospital a good three or four times, and –

Emily: Three, I was admitted three times.

Mike: And every time we went there, we had to go through the same rigmarole of going to A&E, waiting for two, three hours –

Emily: I'd have to sit in the waiting room.

Mike: Going to get into a bed in A&E, wait around more.

Emily: I'd be hooked up to a drip, wouldn't I.

Mike: Yeah.

Emily: And I often had to stay in overnight, just for sort of observation. But it just felt like nobody really knew what was going on. And, you know, I do understand that until a certain age, or - you know - or stage of your pregnancy, they can't really do very much. But it did feel like we weren't really getting any answers, and we just keep being sort of sent home. 

Mike: And you just got the feeling sometimes that people think that maybe you're just being a bit of like a –

Emily: A bit dramatic.

Mike: Yeah. About it. Or, I’m not sure quite what the - hypochondriac, is it?

Emily: Yeah. Yeah.

Mike: Yeah. Just - It was just like you were making a big deal out of something - like 'you're pregnant, people bleed when they're pregnant', but. I, like - trying to - And like I kept trying to tell doctors, like "This isn't just a little bleed, this is a substantial bleed -"

Emily: I'd soak the bed, and things.

Mike: When, when - When we had to call the ambulance out as well, they asked me to - Well, to me, it was one of the worst things, like because we weren't sure if it was just a large clot, if Emily had miscarried. And they said that you have to get that out of the toilet. So that was pretty, pretty upsetting for myself. And then trying to tell that to another random doctor, I know that's how A&E work, so I've nothing against that, but having to explain that to them, that this isn't just like a little bleed, again. There's, there's not something right. 
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Kareena found it really upsetting being in hospital on a ward with new born babies around her.

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Kareena:  One thing that did really upset me was when I was in hospital, a couple of the times that I was in, I was in the ward where the newborns were. So where the mums had just had the babies, we were - well, I was in that ward. But obviously that's not down to the nurses or the midwives, that's literally just a staffing issue, there's no –

Raj: There's no beds.

Kareena:  There's no beds, there's nowhere you can go, really.

But that I found really, really difficult.

Because at that stage I was like 'I have no idea what's happening with my baby, and I'm surrounded by new mums and their new babies'. So it was very, yeah, that was tough. But it's like I said, it's not the nurses' fault, or the midwives, it's just - . At the [Trust name], they have got another ward, but if they've not got enough people to staff it, then they can't keep it open.

So I was there once. But then after that I wasn't there again. But just being surrounded by that, was very difficult. 
Understanding the prognosis

Some parents were told the likely outcome by a doctor in very straightforward terms, that there was no room for hope and that their baby would not survive. But some parents received conflicting opinions which raised “false hope”. Matthew described how “the longer we were there we realised that actually nobody has a clue. Right? I mean, people do have an idea. But nobody really knows, until the baby's born”. Waiting a long time to find out what was wrong was often frustrating and distressing, particularly when communication with staff was poor.

Maxine and Steve felt it was “two weeks of a rollercoaster” especially when they went in to hospital for Maxine to have the birth induced and the doctor wanted another expert opinion.

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Maxine: But obviously what we were expecting on this Tuesday was that I'd take the first tablet and 24 hours later, 48 hours later, I'd come back in and I'd deliver. And then we went on that Tuesday, and we - we had the scan and the fluid had gone down. And we were put into the quiet, the quiet room, weren't we [laugh].

Steve: Yeah.

Maxine: The purple room.

Steve: And I think we were still, in our minds –

Maxine: She was still alive.

Steve: Yeah, she was still alive. But we were still in the mind of, like Maxine says, you know - come in to take the tablet or whatever. The consultant sort of was going to say, "Right, you know, this is what we need to do. What you saw last week is right." And everything that. 

Maxine: It was almost just - we felt that was the confirmation.

Steve: Yeah. And then suddenly, he came and then told us "Ooh, I don't think I can make the decision. I think we need to -"

Maxine: He wanted a second opinion. 

Steve: A second opinion. And it was like, well hold on - we're all - Suddenly, we're on a - It was a rollercoaster. But at the time, the rollercoaster was just going along at a level? And I think we were thinking, right this is where - you know –

Maxine: The Tuesday, it's almost –

Steve: The Tuesday, the tablet's going to start. And we're going to, you know, just carry on. Then suddenly we got this boost again, going up, of 'oh, hold on - I want another consultant to, to analyse what we're looking at'. And you think 'oh, hold on' [laugh].

Maxine: That - it was just –

Steve: The hope came back again.

Maxine: The hope came back again. 

David Z found the toughest part was being in the hospital waiting for information.

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And, and the toughest part in there is when you're at the hospital, you're in the room - in the room, just waiting. Waiting, waiting, waiting. Nobody gives you any information. You don't know what's going on. You don't know if the doctor is going to come today, or maybe in three - in three days, or - or, I don't know. You're just there, and the - The communication is, was - was pretty bad at that stage. I felt like - Obviously we're not the only patients in the hospital or in the whole ward, and. And they're very busy, I understand, but can you just tell us what's going on? It's just - It would take you ten seconds, to just knock on the door and say, "Guys, the doctor's not coming today because he's super-busy, or - yeah, don't - don't wait anybody to come." Or, that's it. You're - At least you know that. And you just can do whatever, and. Or you're not expecting anybody, and if the doctor has a moment at some point, that's a bonus - that's bingo. That's, that's the way I felt. And, and - yeah. Lack of communication. Lack of information all the time.
Fathers also had a difficult time. Facilities were often poor for them and they often described a period of extreme worry about their partner and baby. Those with older children also had to juggle caring for them and maintaining a sense of normality at home.

David Z found it very tough balancing work, caring for his son and visiting Asun in hospital.

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I mean, I mean to me it was very tough because, was working and picking up the little one from nursery, going to the hospital and then here. It was, it was quite stressful. But, but I had to be strong. I had to pretend that nothing was happening, for the little one. And to keep live as, to keep the routine as poss- and the life as normal as possible for [my son], not realising what's going on. Although he felt something was happening. Because he - since Asun was at the hospital. He- So, couple of weeks before all this happened, we managed to put him to his bed in his room, he was sleeping without us. So, so it was like - yeah, that's a big achievement for us. And, and since - since Asun was at the hospital, then he - he slept with me every night. He wanted to be with me. He needed the dummy a lot. So he was all the time with the dummy. He - Yeah, he - It was kind of - He felt that he needed to be with somebody all the time. 
Making difficult decisions about the pregnancy

Parents were sometimes faced with difficult decisions, for example around preventive treatment or induction. Some mothers were offered treatment such as stitching the cervix closed to try to delay birth, if it was clinically appropriate. Unfortunately, this wasn’t successful although the same treatment was successful for some of these mothers in later pregnancies. Making the decision to have a stitch (also known as cerclage) was difficult for some parents. They realised that by pursuing treatment to save their baby, they could be delaying birth for only a few days or weeks. This could mean their baby survived, but would be born very prematurely, and so have a high chance of poor health.
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Joelle and Adam felt unsupported when they were deciding whether Joelle should have treatment to try to delay the birth of their baby.

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Joelle: And no one could tell me anything. And I said, "Well, what's the impact of the cerclage?" And they couldn't give me any statistics at all. And obviously as a sort of [laughing] - not as a statistician, but someone who likes - I wanted to know what decision I was making, and I wanted to make an informed decision rather than just 'get just past twenty four weeks'. They'd already told me that at twenty four weeks they will resuscitate, no matter what. 

And I was like, "Oh, I don't - I'm not sure resuscitation no matter what is necessarily better than getting to twenty three weeks and five days and not." Like so it was - I - And this was all the decision that I had - like information that I hadn't ever really considered. Because once I'd got past twenty weeks, I was like 'everything will be fine'.

So we saw the first consultant. And I said I couldn't make the decision without more information. And then we saw about another four consultants, that morning?

Adam: Yeah. Three - I think two or three.

Joelle: Yeah.

Adam: And they all - none of them gave us any new information. And they were all –

Joelle: None of them gave any information at all.

Adam: And they were all sort of –

Joelle: Useless [laugh].

Adam: They all basically said, "Well, why - you know - why wouldn't you do this?"

Joelle: Yeah.

Adam: You know, they all assumed –

Joelle: Quite judgemental.

Adam: Yeah. Very judgemental.

Joelle: It felt very much like a 'well, you're not doing the best for your baby'. And actually, what I wanted was actually to make sure that I was bringing a child into the world who was happy and healthy. 

And so it felt like quite a lot of people were saying to us, "Put yourselves first. You can have another child." And the doctors were saying, "Have a cerclage. Why would you not have a cerclage?" [Laugh]. And your Mum was saying, "Have the op, have the cerclage." And my parents were saying, "Terminate." And it was just like - My head felt like it was about to explode. 

Adam: Mmm. Yes.

Joelle: And on the Tuesday morning, I think - I woke up, and I was like 'I can't terminate'. It was - it was the kind of 'I'm killing my child'.

But we both came to the same decision. Which was like 'actually, we think we're strong enough to do this'. So we decided to have the cerclage put in. And that - We sort of made that decision by about 8:30. 

Adam: Mmm.

Joelle: Together. Or had you come home and sort of made your decision, and?

Adam: I'd come - Well, I'd come home, thought about it. And I remember speaking to my Mum in the morning, before seeing you.

Joelle: Yeah.

Adam: Still undecided. Or still sort of weighing up the two. And then we went - I went into the room, and I think we both sort of came to the decision together at the same time, and it was the same decision.

Joelle: And there was just this feeling of like release, I felt. I don't care that - And it was very much kind of like the two of us are in it together, and really - It was the first time I think I actually felt like a grown-up [laugh]. Like I really - you know? Like - And people say you know, when you have your child, you realise where your parents are coming from. And that was the point at which I felt like the parent in this.
Some parents had to decide whether to have an induction to start labour and end the pregnancy, knowing their baby wouldn’t survive. If a woman’s waters break very early, it may be necessary to induce labour due to the risk of severe infection (maternal sepsis). Other parents contemplated an induction to end their pregnancy as they knew their baby was going to be born early and they didn’t want them to suffer. Parents found it extremely hard choosing to induce the birth when the baby seemed healthy. Mothers described feeling strong movements and kicking or they heard their baby’s strong heartbeat.

Collette found it particularly hard seeing her baby’s heartbeat on a scan before giving birth.

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Age at interview: 41
Sex: Female
And I did have hope, because he didn't come - I kept thinking they don't know what they're talking about, my son's still alive, and. Yeah. And, I have to say, I've just remembered. The Friday before he came, that morning I had to go downstairs for a scan, to the pre-term birth clinic.

They couldn't get a machine into my room, and they wanted me to go and have an ultrasound downstairs. And the woman there didn't know my situation. And she didn't know my water had broken, and she started scanning, and she was like "There he is, there's his heartbeat. Oh, little boy." And I remember just - My Mum was holding my hand and I was just crying and crying and crying, and she was like "Would you like a picture?" And I was like, "What?" In fact, I said "Yes, I do actually want a picture." I said, "But my son isn't going to live." You know? But I was just - And I know it happens, she's only a person, and there's so many of us and we're all - you know - I want to be understanding, I want to be sympathetic, and. But it's so hard when it's happening to you. Feels like injustice is so bad, and. Don't know.

Lindsay felt it would have been easier to make a decision about inducing the birth if her baby had died.

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Age at interview: 35
Sex: Female
So, the poor midwife that was sort of standing there once the consultants had left, I kept saying to her "So, what's going to happen if I don't do anything?" And she was saying "You will die." "So, what's going to happen if I don't do anything? Sorry?" You know. And she just kept saying "You will die. You will die. Both of you will die. Or you can be induced." And in the end, I said, "Well just plug, plug me in then." You know. Which was just - it was then really bizarre, because [laugh] almost the hormones that were going around in my brain were like 'oh, how exciting, you're about to meet your baby'. You know, those kind of hormones are still there. And I was still feeling him kicking, he had normal movement patterns. And I know I keep saying that, but I think for me, part of my story is it's so important for people to know that actually the baby was fine. There was nothing wrong with him. And again, if he had died, or if he had been suffering - again, it would have made it easier for my head to digest what was going on. But as far as I was concerned, he was fine, and I felt fine, so what are we doing? [Laughing]. You know? It's very hard. Even now, I'm not sure it's really sunk in. Like the gravity of the situation. So. 

How long did they leave the decision with you?

[Sniff] Not long at all. Like I said, there wasn't really a decision. They weren't really asking me, "What are you going to do?" They were like "These are your two options, and this is what we're going to do." And they really were just waiting for my consent to put me on the induction drip. So probably half an hour from the consultant coming in, to me being plugged in, and asking the midwife a hundred times to just clarify exactly what she'd said, what they'd said. Yeah. So yeah, it wasn't really a choice. I think as they said it, they walked in with the medication, really. And with hindsight, obviously that was the right thing. Because I did have a family to come home to. But it's grief mixed with shock mixed with maternal hormones, is just a [laugh] - a really weird concoction to go through. So they plugged me in.
Fathers often described the vital importance of the health of their partner as well as that of the baby when making the decision. This was sometimes difficult for mothers torn between their love for their unborn baby, partner and children. Lindsay’s husband wanted her to focus on how their older son “needs his Mum. You know, regardless of what your instincts are, he needs you to come home.”

Matt struggled with weighing up the best for his unborn baby when Lisa’s life was at risk.

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So, Lisa went in the ambulance and I drove over, and then - and when we got there, the consultant was really reassuring. Because I think just seemed very confident in what she could do. And you kind of hear 'well, these are the risks and those are the risks, and something else is the risks'. And I think that was the thing that we were really struggling with weighing up, was we want to do the best for this unborn baby, and we want to give them the best chance to survive, but then we don't want to put Lisa at risk. 

And I think - I don't know, maybe it would be more for me, I don't know. Because I was worried about Lisa as well as the baby. And kind of the risks of infection, and that seemed to be the biggest kind of thing that was , they were worried about. And if you put a stitch in, and keep it all there, who knows what could happen. So I mean you said at that point, it suddenly gets really, really - moral, ethical decisions you're making about should I - yeah, should we continue, should we? And I think for us, we've got a strong Christian faith, and so the idea of kind of terminating a pregnancy - it almost wasn't, it wasn't really an option. But then, then you're also conscious of - you know - what's the right thing for Lisa. And you don't know all the statistics. And at the end of the day, they're just statistics. So anyway, we talked to the consultant, and she was a lot more - She didn't necessarily say anything different to what the other people had said, but just the way she said it, and. She was quite - just quite relaxed about things.
Most parents felt there wasn’t really a decision to make when the mother’s life was in danger and agreed to their labour being started early. Many parents felt they would prefer the choice to be taken out of their hands by labour starting naturally. For some parents this did happen. When Asun went to have her labour induced, her cervix was already opening, “Obviously everything changed from there … because obviously for me it was easier to go down that road, natural birth - that's what I wanted”. 

For the mothers we spoke to, going through labour and birth knowing that their baby would not survive was extremely difficult and emotional.
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