Ending a pregnancy for fetal abnormality

Finding out how the pregnancy will end

Understanding the details of how and when to end the pregnancy can be as difficult and upsetting for people as accepting that the baby has a serious abnormality. Many women said that they had never thought about how the baby would be born, and people had different views about how much detail they wanted to hear at such a traumatic time.

There are several options for women depending how far the pregnancy has progressed. Up until around 13 weeks most NHS hospitals can offer surgical terminations of pregnancy (see 'Ending the pregnancy surgically'). Later in pregnancy women in NHS hospitals will most often have to go through labour to deliver the baby. (see 'Ending the pregnancy by induction').

She knew that at 18 weeks pregnant she wouldn't be able to have a surgical termination at her hospital but felt too shocked to ask questions about the birth.

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Age at interview: 39

Sex: Female

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I did ask a few questions of what was going to happen. I was already 18 weeks, I just, almost 18 weeks at that point, so I wouldn't have had the option of a surgical termination.

In any case, I knew that I wanted to have a normal labour 'normal', so to speak. So basically they told me, 'Okay, you can't have a surgical termination. This is, you know, you're going to basically have to go through labour. The first two pills we're going to give you today are just going to prepare your uterus. And then when you come into hospital in two days' time, we're going to give you some more and some pessaries and stuff to start the labour. And then at that point it shouldn't really take an awful long time. I mean it will take a few hours, you can have all the painkillers you want, you're going to be in a private room, and you're going to give birth, and that's that'.

And then at the time you're so shocked that you don't ask any practical questions. I did find that I didn't ask, 'And what do we do with the baby after that?' You know, I just didn't even think about it. So we, in terms of practicalities I wasn't really sure what was going to happen.

And then we realised when we got home that we had all these questions that we hadn't asked. And, but because there's someone in our family that had a stillbirth before, they were our first port of call. So we called them straight away and said, 'Well, you know, what do you do? Do you bury, do you have to bury the baby? You can cremate the baby? Do they keep him at the hospital? What, you know, what do you do?'

She knew nothing about ending a pregnancy and said she felt too frightened to ask questions about...

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Age at interview: 45

Sex: Female

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Because you just don't hear about, I think you hear about it more and more but I'd never actually heard of 'termination for fetal abnormality'. I didn't know whether you could do it, I didn't know whether you, what the time limits were or, or anything like that. And I think things that we were frightened about you can't even articulate. I mean to me the horror was that the baby would be born alive - and nobody actually explained at what point, you know, the baby, you know, the ba-, would die, or is there any way of making sure that the baby had died before, you know, the termination started. I don't know, and in some ways it's so horrible you can't, you, you can't even ask the questions. I don't know how there's any ways of addressing that.

A number of people have said to me, 'Did you really have to go through a normal delivery?' Well, nobody's actually said why we didn't, but I mean clearly, you know, surgery for a C-section is, is pretty major, especially when you've had it since and really appreciate that. But I think that could have been made clearer.

Unless they had given birth before, most women were shocked to discover they had to go through an induced labour and normal (vaginal) birth. Most had expected to have a D & E (dilatation and evacuation) or Caesarean section. Several women said that their partners had been shocked and angry when they found out about the process of termination - and one man said he had expected doctors 'could just magically whisk it out somehow'.

Her immediate reaction on finding out she needed to go through labour was not to end the pregnancy.

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Age at interview: 33

Sex: Female

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The next shock that was to come, was that I'd got to inform my midwife. So I phoned my midwife and this was the bit I hadn't researched, and she said, 'Right, okay, I'll ring the labour ward and book you in.' I said, 'At labour ward?' She said, 'For the procedure,' I said, 'Why do I need to go to the labour ward? Won't I go to the general'?' 'No,' she said, 'You do know what will happen, don't you?' And I said, 'Yes, I'll have a general anaesthetic and it will all be done and ' 'No,' she said, 'You'll have to go through the labour,' which I hadn't comprehended, that hadn't sunk in, although I knew it, I did know this but it hadn't, I hadn't realised it.

So that threw me, I said, 'Right, I'm not doing it.' I said, 'I'm not doing it, I've changed my mind.' My husband said, 'Now, don't be silly but, you know, we've made the decision and we've got to, you know, if that's the way it has to happen, that's the way it has to happen.' And I, I, it just completely threw me, it really did throw me completely. I genuinely did think, at that point that I would go in, have a general anaesthetic, it would be like having a D & C, that kind of termination. It hadn't registered that because I was so far gone, I would have to go through a full labour.

She couldn't stop reading the ARC (Antenatal Results and Choices) booklet about ending a...

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Age at interview: 41

Sex: Female

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I didn't really know what Edwards' Syndrome was, was just beginning to get some information together. Most people I, hardly anybody I spoke to, knew anything about it at all - family or friends - and to actually have somebody on the phone who said, 'Ah, yes', you know, 'I know what you mean', and knew kind of what we were going through really, was, was, just listened, was really, it was really, really helpful.

And also sent, you know, they had lots of booklets that said, 'Oh, we've got a booklet on this', which you know there was a booklet they had about, you know, one about telling children, or telling your kind of grandparents, or what they could, you know for grandparents, I think it was. Another one which on the helpline, the lady at ARC said, 'Well, we can send you this, we know you may not want it yet, but it's about kind of a termination, about the kind of decision-making process and, you know, we could send that to you now, or we can send it to you later. What do you want?' And I said, 'No, send it to me now'. I thought, 'I'd rather start reading,' and that was good.

And then the, two days later, the booklet arrived from ARC in the post, that's about termination, and I think I wasn't even dressed, my husband was going to take the other one to school, my oldest daughter to school, and I wasn't dressed, and I opened this booklet, I was eating my breakfast, and once I started reading it, I couldn't stop reading it.

And one of the first things I read really shocked me, which because at this stage, I would have been 13 weeks, and I read that from 13 weeks on, if you have a termination, you have to give birth, and I'd had no idea that was the case. And I just couldn't believe it you know, I virtually broke down I think I read that when my husband was taking our daughter to school, and by the time he came home, I was in a right state, you know. I just had no idea. I don't think I'd really thought that much about, I'd sort of realised the word 'termination' was potentially on the horizon, I'd assumed it would be some sort of surgical procedure. I hadn't any idea it meant giving birth.

The kind of questions women felt had been left unanswered by health professionals were details about what they should expect during labour and birth, at what point the baby died, and what effect the medication they were given to induce labour would have on the baby. Several women said they had only thought about difficult questions after the termination, others had not wanted to voice them at the time. However a few people said that being given too many details about procedures had upset them.

She wished someone had explained how her pregnancy would end because it was too difficult a...

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She wished someone had explained how her pregnancy would end because it was too difficult a...

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Age at interview: 32

Sex: Female

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I'd tried to find the information for myself by looking in books and also the pregnancy booklet the NHS give you. I needed to know what happened, because of how many weeks through the pregnancy I was. I was, at that point I would have been 16 weeks, 16 weeks, I think, yeah, 16 weeks, and I didn't know whether I'd, you know, they'd just do like a D & C, or whether they would, I would actually have to go through with the labour.

And I couldn't find this information anywhere. And I felt really bad that I actually had to ask whether I would have to go through with the labour. Nobody had said, 'Because you're so many weeks, unfortunately you have to'. And I found that a very difficult question to ask because I think I knew that I was actually going to have to go through with labour, and obviously not have a baby to bring home at the end of it, which was very difficult to find out.

And when I, when I told my partner, I just was in tears. It was just very very difficult to think how you would feel at that point.

Who did you ask? Did you ask the midwife, or did you ask at the hospital?

To find the information out I actually spoke to the fetal health coordinator at the local hospital. I was in probably fairly close contact with her because, with waiting for the results from the amniocentesis, I was, I just felt I needed to know everything. But it, the information wasn't offered, I always had to ask. I think I've always been a person that would rather know than not know. The not-knowing is the scary part because you have things rushing through your mind as to what may be. I'd rather know and have the information offered.

And sometimes, because of the way that you feel, it can be scary to ask, and the words don't always come out as they should, and it can take a long time to ask.

Some women said that health professionals had been supportive and willing to talk to them about labour and birth - one woman chose to have a normal delivery though she could have opted for surgical termination - and another woman definitely wanted to have a surgical termination even though she suspected she had been almost beyond the limit permitted at her hospital. Other women said they had not been told very much by hospital staff and had received nothing to take home and read before the termination took place.

As a nurse she encounters women who have not been given information about how their pregnancies...

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Age at interview: 43

Sex: Female

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Probably if I hadn't, I mean if I hadn't known about ARC (Antenatal Results and Choices), or SATFA as it then was, nobody gave me the information at all. I literally... I think I went on the internet, and I found their number. And it's very sad that that's still happening. Because I know where I work I've had an incident recently with a, with a mum who sadly went onto have a termination and had nothing. And it was only when I happened to pick her up during a routine GP session really and found that she hadn't been given anything either, and I was able to give her the information. But if I hadn't had that where would she have gone for it? Which I think was very sad that even now, 9 years on we're talking about, so a good long way, people still aren't getting the information, which I think is very, very sad.

Some expressed the view that once they had decided to end the pregnancy, health professionals had rushed them to 'get on with it'. Several people said they needed more time to think about what they wanted.

She felt pressurised to make decisions before she was ready and wanted more time to decide how...

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Age at interview: 31

Sex: Female

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And at this point, when we got the results we also had an appointment to go back to our first hospital to discuss with the obstetrician what we wanted to do. So we went to see him.

Unfortunately, I don't know whether he hadn't read our notes before he came in or what, but he was probably the most unhelpful professional that we met. He seemed very, he was like, 'Right, you've made the decision to terminate so let's just get on with it,' and, you know, 'Go home and forget about it.'

And in fact, we were wanting sort of more information from him and he said, you know, explained about taking the tablets 48 hours before you want to go in, and so he was saying, 'So, if you want to take them now and come in, in 48 hours,' and I was saying, 'No, you know, I need some time to think about this', and I was thinking more like, we'll be coming in, in 2 weeks' time.

He seemed, he explained to us that for some terminations you can have under scan, under ultrasound you can inject the baby's heart with potassium, if you like, to do the termination, and then you give birth afterwards, which for me was horrific and was just not an option.

I just can't imagine, you know, it was really, one for me, I didn't want to give birth to a baby that was already dead, to me that was even worse than the situation we were in. And to watch it on screen that happening to me just sounded absolutely horrendous, just cruel.

So when I said to him that I didn't want that, he seemed, he was almost like quite surprised because I was telling him what I wanted, rather than him telling me what was going to happen and me saying, 'Okay.'

So I said to him I didn't want that. I said that I wanted to give, just to give birth and, you know. And the fact that I said to him that I wanted a couple of weeks to think about it. As well as the practicalities of sorting out baby-sitters. [husband's] parents were away on holiday so we had to wait for them to come home and things like that. And when I said to him, 'I want to wait a couple of weeks,' his, his comment was, 'But you do realise your baby might be alive when they're born?'

Which was like, 'Yes.' And that seemed to be a problem, 'Well, that means you'll have to get a birth certificate,' and he didn't for one minute seem to think that I wanted, I wanted a birth certificate. I wanted my baby to be alive when they were born because I wanted them to die with me, and he didn't seem to have thought about that.

And, you know, I can understand that unless you've been in that situation you wouldn't think about things like that, but it seemed like he had a very narrow view of what happens. It's like, you've decided to terminate this pregnancy so 'let's just get on and do it and not think about it, go home and get pregnant again' sort of attitude.

And he didn't seem to grasp the fact that this was my baby, and I want this baby but I'd found myself in these circumstances, I want this baby to born alive. I want her to have the respect of a, you know, rather than something that's going to be pushed away and forgotten about.

Many women had been given a booklet written by ARC (Antenatal Results and Choices) which was highly recommended because it explained all the various procedures and described the kinds of things that might happen during and after the termination. Others who had not been given the ARC booklet or any other written information about termination procedures afterwards said that hospitals should provide the booklet as a matter of course.

She was shocked at what she read in the ARC booklet but was glad to know in advance what was...

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Age at interview: 38

Sex: Male

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The specialist in [city] confirmed the major heart defects and then we were sat in a room with, she was sort of a counsellor midwife, and she handed us the book then and just talked through a few things.

And we came home on the train reading the booklet. I've still got the booklet, I've still got the booklet, last night I got that. And that was, I can't, it was a bible. I mean there were things in there which I didn't even realise. It was silly little things, about, almost about giving birth to be honest. I mean you said about termination, you don't actually... because it had never occurred to me before, I'd never even had to think about it, you suddenly thought, 'I'll have to physically give birth'. And that's explained.

And then, you know, will you give birth to a live baby? Or whether you've had a baby before, where will you give birth? They, they put all the questions that you should ask, and I actually, I sat down that evening, I think, I'm not sure if I had a question, a checklist of all the questions you should ask, and I wrote them all down on a piece of paper.

And the specialist at our local hospital found this, and she said, 'Oh, I've just been reading through this,' and we went through them together. And it was just like the, one of the questions was where you gave birth and, because it said some places, hospitals you give birth in the labour ward, which to me seemed dreadful, you know, and I put, 'No'. And, but she explained that they had nowhere else, and you're in a private room. So that was fine, you know, that was okay then.

She only heard about ARC (Antenatal Results and Choices) by accident from a friend after she had...

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Age at interview: 41

Sex: Female

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Well, I was, I mean, that's actually something that's worth mentioning, that despite the fact we'd gone to a clinic and a hospital who are at the kind of forefront of kind of antenatal stuff and problems, no-one actually told us about ARC. Which ARC were surprised about and actually, didn't actually give, I don't think we really came away with any information, apart from what you've been told verbally.

We didn't have any leaflets or anything, and it was actually just chance that on the Saturday morning, through... I spoke to another mum from the school where my eldest daughter went to school, about something, and she'd known I was pregnant, and I just mentioned, I said to her, 'Oh, you know just having the most awful time,' and briefly told her what had happened, and she said to me, 'Oh, I'm really sorry'. Then she said, 'Actually, I had a baby who had Down's and I had a termination before'.

Yes, she's had this experience before her daughter, who's the same age as my elder daughter, and she said - I hadn't known that she'd this experience - but she then said, 'Oh', she said, she said, 'Oh, it was just awful. I know you know, really, really sorry, because I know how terrible it is. There's a really good organisation called ARC,' she said, 'I've actually got some newsletters, I'll get them to you'.

So that's how I found out about ARC, and I think, it was a bank holiday weekend, so, the Tuesday I think, I was on the phone to them, as soon as their, kind of their helpline was open again, and they were fantastic. Just to find some, somewhere a source of information, somebody who knew what you were talking about when you said Edwards' Syndrome, who knew what you were talking about when you said, when you sort of explained about the tests, or talked about what was happening at the hospital, would say, 'Oh well yeah, you know, this should happen next, or...', was just fantastic, it really was.

Several women whose babies were unlikely to survive birth, said that health professionals had mentioned the possibility of carrying the pregnancy to term and 'letting nature take its course' without medical intervention. Everyone who had considered this as an option felt it would be more upsetting to lose a baby having carried him/her to term, than it was to end the pregnancy earlier.

Several women talked about how a medical, as opposed to a surgical termination, kept the baby's body intact and also his/her 'dignity'. Some women felt that going through labour pain was a small price to pay for the baby, and one woman said that in her opinion the termination was in effect a premature birth.

She wanted to end the pregnancy rather than let her baby go to term because she didn't want him...

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Age at interview: 36

Sex: Female

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Yeah, I never thought about just letting nature take its course. I don't know, for 2 reasons, really I suppose I didn't want the baby to suffer any more than it had to and there's all sorts of research now on when babies feel pain. At that time it wasn't thought to be before 20 weeks or 22 weeks or something, and I didn't want the baby being born, maybe at 34 weeks and struggling for life for a couple of hours or days or something in the special care unit and they weren't going to live. To me that's putting the baby through more pain than was necessary.

Some were confused about what would happen if a baby more than 24 weeks gestation was born alive and whether health professionals would have to resuscitate the baby and give him/her medical treatment.

See also 'the impact of the decision'.
Last reviewed July 2017.
Last updated June 2014.