Losing a baby at 20-24 weeks of pregnancy

Experiences when a fetal anomaly is detected before birth

We spoke to three mothers who found out their baby had a severe anomaly at a routine scan. Their experiences may be different to other mothers who have found out their baby has a severe anomaly. Their pregnancies had been progressing well, so finding out their baby had a severe problem at their 18 to 21 week scan came as a great shock. Alison described how “in a few minutes… it all kind of went wrong”. Helen remembered it was ‘horrible’ when the sonographer’s face went “from normal to 'ooh, I need - you stay here, I need to go and get someone and check this'”.

Sam clearly remembered “every single step” of the day she found out her baby had a severe anomaly.

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Age at interview: 26
Sex: Female
So, yeah. I - We, we got quite excited about it. I remember my twelve week scan and everything was perfect. There was no abnormalities or anything. And you know, the twenty week scan we just thought 'oh yeah, we'll go, we'll get checked, and everything will be okay'. And [sigh], it's scary, because I remember every single step of that day. I remember sitting on the bus going there. And my manager had messaged me saying "We really need you to come in as soon as possible, because we're - you know, we're really short-staffed, such and such has rang in sick." So I was like 'okay, I'll just get it done'. You know, we were almost rushing through it because of that. We were the first people in. So we went in. And it was a - it was a nurse that was doing it. Was it a nurse? It wasn't who was supposed to be doing it, anyway. It was someone different. And she scanned, and - you know - she was lovely. She was talking to us, and she - And then she went " I'm just going to go and, go and get someone." And when she was out of the room, my partner at the time just went "Something's wrong. Something's really wrong." And I was like "No, no - it'll be fine. She's just getting a second opinion." You know? 

I mean, I worked with children at the time, so it was common practice for me to go and get someone else just to have a look, and then they go "No, it's fine - don't worry about it." So, So I - you know - I was like "No, it's fine." And then we - we sat there and waited for someone else, someone more superior to come in. And she had a look, and she went "Okay, I'm just going to have quite an in-depth look." And she said "I'm just going to - just going to focus on this for a minute." And that was fine. The other nurse was talking to us and everything. And she went "Right, I do think there's some abnormalities, and I think we need to - need to get you in to see a doctor, a consultant, as soon as possible." And as stupid as it sounds, my first thought was work, 'oh my god, I need to get to work'. And I don't know if that was just my mind trying to distract me from it. And I burst into tears, and I was like "No, I can't stay - I need to go to work, I need to go to work." And the nurse, the - the more superior nurse, the one that came in second, she went "No, we're going to ring your manager and tell your manager you're not going to be in today." And she actually took me to the office and said "No, we're going to - you know - I'll speak to her if you don't want to." And I was like "She's not going to like this, you know." And I was more worried about that than I was with what was actually going on.

And I always kick myself for that afterwards, but I know that that was my way of taking some control from the situation [laughing]. And she was lovely. She spoke to my manager and said, "Sam won't be in today. She needs to go and see a consultant, I don't know how long it's going to take - she could be here until six o'clock this evening."
Making decisions

What was revealed in the scans presented parents with very difficult decisions about whether to continue with the pregnancy. Sam and her partner decided to end the pregnancy when they found out their son had a severe problem with his bones and would only live for a few days. Alison and her husband were told their son was only likely to survive a few hours because of a problem with his kidneys, and didn’t want him to suffer being “hooked up to machines”. They had to wait over a weekend before they could get a second opinion which confirmed the anomaly and they decided to end the pregnancy. Both Alison and Sam’s pregnancies were ended by taking tablets to induce their labour. This meant they then went through labour and gave birth to their baby naturally. In some cases mothers are offered the option of ending their pregnancy surgically.

Helen was told that the chances of her baby surviving and living a healthy life were very low. Her Catholic faith guided her towards undergoing a high risk procedure that might help her baby. But it had only a small chance of success and sadly her baby died at 23 weeks of pregnancy and Helen had to have her labour induced.

After the diagnosis was confirmed Alison decided to take the tablets to prepare her body for labour.

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Age at interview: 30
Sex: Female
They offered for us - they said you can go - there was - they didn't put any pressure on us, to make a decision then. They said, this - we can do this for you, - but because we'd had the long weekend of working it out, we just didn't want to, yeah. It was all - It was all quite a blur. So they, yeah, so I took the medication there, and I think we were - I don't know whether they were surprised that I just kind of wanted - after we'd had all of that time to think, it hadn't been - it hadn't been a short amount of time we had. And then - So we stayed in the hospital. And I – They’d - they'd vaguely said that - And I think at that point I hadn't realised properly that I'd have to actually give birth. I thought - I don't know what I thought. I just don't think I'd thought about it, because you just don't. And there was an idea that, oh it'll – I’ll - . And so they, the midwives explained that it'd be going through giving birth, rather than any other procedure. And I think he was maybe just too big to do anything else. But in hindsight, that experience - as awful as it was - I think it would have been harder to not do that, in hindsight, to have not actually given birth. Yeah. So [sigh] I was on the, on the ward, on various drugs to start labour going. Because obviously my body didn't really want to, and that took - it took quite a long time. We got there - I think I'd taken a pill then we came back the next day.

Helen described her experiences after undergoing the high risk procedure to help her baby.

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Age at interview: 43
Sex: Female
Then we've got to go for this risky procedure, this small chance of helping her.

And so we went back the next week. We told her our decision. Or my decision. Again, that caused problems. Because as the mum I had a bit - it wasn't an equal decision.

My husband couldn't force me to do it, even though that's what he wanted. It was my - ultimately my decision. So that was a bit tricky between us. But the doctors of course were completely professional. They understood - you know - why. You know, "We're not going to terminate." "Why?" "Because I'm Catholic." "Ah, right." They took that. They knew that was a cultural religious reason. 

So, they were "Okay, right. So, we've got to do that other procedure. Okay, right." So they booked us in for the other procedure, again a few days later.

So I was twenty three ish weeks then. And up to that date, I'd been feeling the kicking. And obviously because it wasn't my first pregnancy - she'd been kicking - I probably knew what was happening from about eighteen weeks. And she was quite - she used to kick quite a lot, you know, so I knew when she was kicking. My husband had driven up, because getting the train was too traumatic for coming home again after such a thing. So we were driving home. And - it was March, it was cold, yeah. It was wintry type weather. And it was - by then it was peak hour traffic, and so it was all stop start.

So I was - you know - relaxing in his car, in the passenger seat. But as the journey went on, the slow journey, I realised that there was no kicks. And usually if I was just lying still in a chair like I was, I would feel kicking.

So I told my husband that. And he's like "Okay, well - you know - they did warn us about this." Because they did warn us this might happen, that Emily would not cope with having the needle inserted. Okay. But overnight, still no kicking. Still didn't feel any kicking. So, next day, "Okay, we need to call our local hospital now, and say." So we went in. I think by then it was a Saturday. So they were a bit reluctant to call us in, because of course I was only twenty three weeks. Not everybody at that time feels kicking. So they were a bit, "Really? Do you want to come in?" But eventually I think between me and [my husband], we're like "No, we have to come in. You know, I know you're busy or what have you, but we have to come in. We have to be put on a monitor and find out if you can hear the heartbeat." 

So, that was Saturday afternoon. We went up there. And I was strapped to the monitor. And again, the same old thing - you know – from the sonographer days. The Consultant came in, like "Ah, okay" You know, just treating you like a normal worried mum at twenty three weeks. "Okay. Well come on, lie down, we'll strap you up. I'm sure we'll find a heartbeat, I'm sure there's nothing to worry about." Laid us out. And again, it was busy. But eventually they brought the machine to us. You know, it must have been a midwife and the whoever, whichever doctor was on that day. So the midwife, who would normally hear the heartbeat, couldn't. So she had to call in the doctor. So eventually he came in. And very - And it was an old machine that they'd just had to find. But he could just hear a heartbeat. But as he said to us, "It's really faint. So, I think - based on what's happened to you, where you've been, and what's happened - what will happen is, the heartbeat will just get fainter and fainter. And eventually the baby will - your baby will die inside you. And then you will have to deliver the baby." You know? So, [sigh]. Horrendous. Awful. So. That is what happened. So they booked us in then to go in on the Monday, and to listen again. And by then, there was no heartbeat. Then they booked us in to come in on the Wednesday to have the - be induced, effectively. Have the drug to be induced.
For the mothers we spoke to, going through labour and birth knowing that their baby had already died was extremely difficult and emotional. 
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