A-Z

Antenatal Screening

Making the decision to continue with the pregnancy

Parents who decided to go ahead with a pregnancy knowing the baby would have health problems or disabilities described the decision-making process they went through. (See also 'Parents of Children with Congenital Heart Disease').

Some people had to think carefully whether they would want to end the pregnancy, while others never had any doubt that they would continue. Most people thought it was right to be offered information about termination, as each person has to make the decision that is right for them and their family. Most felt under no pressure either way.

 

The information from screening and diagnosis helped them in deciding to continue with the...

The information from screening and diagnosis helped them in deciding to continue with the...

Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
It's really difficult because I think, I know - I mean, I have a friend who has just declined, although she's got a heart baby, she's declined to have a heart scan because she's basically said - it's taken her a long time to get pregnant this time - and she's basically said, 'Well, even if it's got a heart problem I'm not going to terminate.'

So I mean, that's obviously a hard decision to make. And I think it depends on what you want to get out of it. I mean if you go in with the thought in your head that, 'Well, if there are any problems then we will terminate anyway', then it's the right decision for you. But even with us not knowing what we would do it gives you the choice. I think it's a good thing because it does put you in a good position where you've got the choice. 

And although you say, you might say one thing before you have it - 'Oh yeah, well, if there was a problem I'd definitely terminate' - you don't know how you would react until you're in that position, when they actually say to you, 'Your child's got a heart problem', or some sort of defect, 'but it's not going to, it's not going to affect them' - it might be a cleft palate or whatever 'but it's not going to affect them very badly.' Or they might say to you, 'Well, your child's got a problem that is going to mean it's going to have a terrible life.' And then it gives you the choice, I think. And I agree that everyone should have the choice.

I've spoken to other parents who felt that the termination thing was pushed on them maybe a little bit too much. I don't feel that ourselves. It was offered as an option, but that's all it was. So I think I'm probably quite glad of that, because you're in such turmoil when they tell you, you don't know what to think. All you can think is, 'Oh my God, I've got a child who's got a problem and who may not live. He might have a terrible life.' And I think it would be quite easy to make the wrong decision, if you're not informed enough.

One woman said she had been put under pressure to end the pregnancy, but at 8 months it was simply too late for her to consider, however poor the outlook was. Several others also said they just could not contemplate termination because they felt it was too late in pregnancy, especially if they could already feel the baby move.

 

She wanted to keep the baby, although she was advised to have a termination. She felt at 8 months...

She wanted to keep the baby, although she was advised to have a termination. She felt at 8 months...

Age at interview: 28
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
No, no. I couldn't have gone through it at that, at eight months pregnant. As I say, if I would have found out sooner, then it might have been different, but not at eight months, no, no. And I wouldn't have seen it as like a stillbirth anyway. I just think it's torture to put any woman through that - to even think of putting them through that, to be honest. 

They just give you maximum half an hour to think whether you want to terminate your pregnancy or not at eight months, and then you have to give birth to the baby in twenty-four hours time, and then you're sent home on your way. I think it's, I just think it's evil, to be honest.

You said he [the consultant] wasn't very sympathetic?

No, he wasn't very sympathetic at all, he was, he just basically, he told me a bit of jargon and I asked him to tell me in English. And he basically said that, 'She only has half a brain and the other half is a cyst which is putting pressure on the other half of the brain, which means that it could stop her oxygen supply to her brain which then', he said, 'that will make her even more severely handicapped', if she pulled through it. And he just said, you know, 'My recommendation is that you have a termination', and that was it.

You didn't talk to anybody else. Were you offered anybody else to talk to for counselling?

No, no, nothing at all. Not at that stage, no. I suppose I would have been offered counselling if I'd decided to go through with the termination. But that was all we were offered was a termination, and he came back and I said, 'No' again.

Very occasionally people found it offensive that the option of termination was even offered, and several found it distressing to think about the choices. A couple expecting a baby with Down's syndrome had also been told about adoption, which they would not have chosen, but thought it was useful information.

 

They had made it clear they wanted to continue the pregnancy, and were offended that termination...

Text only
Read below

They had made it clear they wanted to continue the pregnancy, and were offended that termination...

HIDE TEXT
PRINT TRANSCRIPT
Father' We may be right, we may be wrong, but we felt that they were only looking to operate on babies that had the best chances. And that was one of the main reasons why we went to the hospital that we went to'..

The three offers at the other hospital were one, proceed with the pregnancy and the baby's born and they don't do anything, and basically it meant that with his condition he would have died within a couple of weeks. Two, he was born and we do this surgery. Or three, they actually offered to terminate there and then'..

And there's probably no relevance to his condition but we'd already lost a boy only 18 months earlier who was stillborn at roughly the same time, 8 months' pregnancy and to be told, you know, to terminate there and then we didn't feel there was...

Mother' I mean, I wouldn't judge anybody on making that decision but I personally found it offensive, because the reason we'd sought a second opinion, and we'd made it very clear in advance of going, was because we decided that we wanted to proceed whatever the outlook and give him the best possible chance, and that was why we'd bothered to go all that way for a second opinion.  

So in our particular case I didn't think it was even appropriate to ask the question. Whereas for another family that might have been just what they wanted and, you know, it would have perhaps been right for somebody else but I don't feel in our circumstances that I'd have felt happier if they hadn't even broached that with us.

 

They were given useful information about the condition and about termination, but it was...

Text only
Read below

They were given useful information about the condition and about termination, but it was...

HIDE TEXT
PRINT TRANSCRIPT
At that stage we were presented with a series of choices. Whether to have a termination, whether to carry on with the pregnancy, and if we did carry on with the pregnancy whether to go for what they call 'comfort care', which is letting the disease take its natural course, having the baby and then letting the baby die a natural death in the first few days of life. 

And we weren't put under any pressure to decide which was obviously quite, you know, a very good thing, but in a way sometimes you want somebody to help you decide because it's such a horrible decision to be faced with. But being told that there are three options and all three are valid and all three are fine for different people I just found was really, really difficult.'.

We were given various pieces of literature. We were given a book from one of the support groups, a little booklet from Left Heart Matters which explains about Hypoplastic Left Heart and explains some of the sort of 'what does this mean' kind of questions. We were also given from the hospital a booklet called Antenatal Results and Choices which is all about if you know, what sort of things to think about if you want to have a termination.

And were they helpful, these particular leaflets?

Yeah, they were very helpful but I found that I couldn't read the Antenatal Results and Choices' one without crying. I just, you know, it was just a horrible booklet because of the subject matter it's got to cover. And as I say, I just couldn't read it without just crying virtually all the way through because it was just so awful to think about.  

And especially because of the stage of pregnancy I was at, it would have meant, you know, the baby had a chance of being born alive. So it was a case of they have to actually, in fact, kill the baby inside you and then you deliver it and I just thought it was just so awful to think about.

One woman felt the doctors gave her very little hope because the baby's heart condition was so serious, and was told 50% of parents would choose a termination. She described how she made herself think through all her different options, and how none of them seemed bearable.

 

Before deciding to continue with the pregnancy, she made herself think through all her options,...

Before deciding to continue with the pregnancy, she made herself think through all her options,...

Age at interview: 41
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I missed out, I mean I should have mentioned to you that one of the things we talked about on the Friday, the day of the diagnosis, was, I made myself ask a sort of, you know, 'Okay, if I decide to go ahead with the termination, how does it happen? Because I need to know, you know, if I'm going to consider it. I don't think I want to do it but, you know, please tell me how it happens.' And I still can't talk about it now without getting really emotional about it.

Do you want to stop for a bit?

Ooh, gosh, it takes you by surprise sometimes. No I don't mind, it's all right. It takes me by surprise because of the strength of feeling remembering that day, it was such a traumatic day. Oh God, yeah, sorry. 

I asked one of the, I don't what, I don't know exactly what she was, I'm not quite sure what her position was, quite a senior person anyway, in the fetal medicine unit. And she was the one who was talking to me, very, very nice. 

They were all, they were all very nice people. I mean very, they all had very good manners, I mean, when they were giving these, this bad news. But she said, 'Okay, well, what would happen would be, you know, we would inject, put, you know, inject something into the baby's heart and it would stop. I said, 'Well, would that happen quite quickly, you know?' And she said, 'Yes, yes, it'd be very quick.'  

I said, well, that was actually a horrific idea to me, that's why I find it very upsetting still to talk about it. And she said 'The alternative would be palliative care; that you would give birth to the baby but then we wouldn't operate and he would naturally die.' 

So I said, 'Okay, well, how would that happen exactly?' And she said, 'Well, you know, the labour would be induced or you'd go into natural labour. You'd give birth on the labour ward with all the other mothers, you know, were perhaps having healthy babies and keeping their baby and then, you know, then we wouldn't intervene, and he would probably die and we'd try and keep him as comfortable as possible until he died.'  

And all these things were such awful prospects, you know. When you're pregnant you just want to nurture this child you're carrying and all your instincts are so, you know, protective, and all these things they're telling you, like 'Right, you can offer your child up like a lamb to the slaughter, I'm going to stick a needle in his heart and stop it, you know, or you can give birth and then watch him die or, you know.' All of them were just so horrendous, you know. 

And I made myself, that weekend, think about them, think, 'Yeah, but how do you weigh that up, how do you weigh up that horrible experience, you know, for the child against longer term suffering or, you know, quality of life or the fear the child might have of knowing that they've got a serious condition that might kill them?' 

And I really was trying to weigh that all up at the time, and that's what we didn't really have support with, to be honest. The actual medical side of things was great, I couldn't fault it. But how, as a, you know, as a human being you make those sorts of decisions, you know, 'Do I stick a needle in my baby's heart and kill him now? Do I give birth to him and then sort of hope that he doesn't die, have a heart attack and drop dead at the age of 5, you know? Or, if he survives it all, which is the best you hope for, how will he live with the burden of this knowledge of this terrible uncurable thing?  

Is it going to scare the life

Although her medical care was excellent, she would have liked more support in thinking through her decision. Like many people, she found help from a charitable support group for parents of children with hypoplastic left heart, although she acknowledged that support groups may unintentionally steer you in a particular direction, however hard they try to remain neutral.

Clearly the nature of the diagnosis has an impact on the decision, and the extent to which the condition is treatable was also important for some people. Although heart scans may not reveal the full extent of the condition, a number of people said that while there was hope their child might be treated they wanted to go ahead.

 

The hope that their son's heart defect could be treated kept them going.

The hope that their son's heart defect could be treated kept them going.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I mean I suppose with Down's there's no way back - it's a condition and it's there. Whereas I think we were buoyed by the fact that children with heart problems - you know, anyone with a heart problem - you know, they do bounce back and you know the success rate is fantastic.  

And I think I remember one of the doctors saying that, you know - I didn't quite ask, 'What would you do?' but I sort of almost inferred it. And I think the answer then was, "I know someone who had a ventricular septal defect thirty years ago. They had an operation and they're still walking around, they're fine.' 

Now that's a great success story, and I'm sure there are other ones that don't go so well. But I was, you know, that gave me some hope that this is not completely a traumatic or terrible thing, because we can get over it. So they got into my head that medical science has moved on dramatically in thirty years, even in the last ten years, so you know, that kept me going, that personally, about my experience, that kept me going thinking that they can do some magic stuff now. 

They can do some really incredible things. So you know that spurred me on, kept me going and kept - I think the most important thing was that we both kept believing. We wanted this so much that we just kept believing.

This man's wife described how they thought through explicitly what their reaction would be to different diagnoses and what the impact would be on their wider family. Given their history of miscarriages they were concerned this might be their last chance to have a baby so they really wanted to go ahead, but did not feel they could cope with a baby with a chromosomal condition.

 

They thought through how they felt about different conditions and whether they would want to...

They thought through how they felt about different conditions and whether they would want to...

Age at interview: 36
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, ultimately I probably wanted to discuss it more than my husband did, and I think he's very much the kind of person 'Let's make a decision, let's talk about it when we have all the information', whereas I need to start making that decision early on, I need to have all bases covered. 

So we had talked about it in detail, on my instigation I guess, and there were really two scenarios, I suppose, there were - well, three. There was, you know, the fact that the baby might be absolutely fine, in which case obviously we would progress; the fact that the baby might just have something wrong with his heart, in which case we'd pretty much made up our mind that we were going to go ahead, because heart surgery would - I don't think at that point we knew what it would involve - but we knew that it would be surmountable, and it seemed so far away, and we so desperately wanted a baby that it didn't really matter and - 'it didn't really matter', that sounds really dismissive - but, you know, it seemed like a problem we could overcome. 

And because of my age and because of our 2 previous miscarriages, when we discussed it, I sort of said to my husband, 'This could be our last chance to have a baby so I don't want to' - you know, a heart problem - yes, it's an awful thing but it's not the end of the world, and it can be overcome. So that was where we were with that. And then obviously the third and final scenario was that there was some chromosome problem as well, which was very common with this particular heart defect. 

And again within that sort of remit there were various problems. It had been explained to us, you know, it might be that the baby had Down's, or it might be that they had a very serious chromosome problem, which was quite common again with this heart complaint, where the baby would either die before birth, but if it survived the birth itself it would be very badly handicapped and would probably die very soon after birth anyway. 

So I think at that point we talked about that scenario and decided that actually we wouldn't be able to go through that, because it's not just us that's affected. It would be awful for us to go through that. You know, having to go through the nine months of pregnancy knowing your baby probably wouldn't survive would be very hard and very stressful, and actually to some degree in our minds pointless, which sounds selfish, but you've got to think about the other people you are putting through that as well. You know, young children in the family, sisters, brothers, parents, friends. 

And that it isn't just about you as a couple - it is about so many more people and how they react towards you, and how they, how comfortable or how uncomfortable they feel in talking to you about it.

Did you find that you pretty much agreed on your responses to the different scenarios?

We did, except for the scenario that actually was the scenario that eventually, you know, came to be, and that was where the baby had a heart condition. And I wouldn't say, we didn't disagree, but I was absolutely adamant that I wanted to go ahead with the pregnancy, because I did strongly feel that I may not get another chance to have a baby. 

My husband was a little bit more, he wasn't reluctant, but he was a little bit more concerned, he wanted to think it through in more detail, and he wanted to have more information from the doctors. And I think that's perfectly acceptable, you know. He wanted to be armed with all the facts. I just thought, 'This is a chance to have a baby, I want a baby. The baby may be ill, but there's a good chan

In making their decision, parents were trying to weigh up the interests of their baby and giving him or her the best possible chance, as well as what was best for them as a family.

Whilst some people felt they could not cope with a condition that would probably be untreatable, others felt differently. One couple whose baby had Down's syndrome and a heart problem felt they would want to continue with the pregnancy unless they felt the baby could not give and receive love, or if his heart condition had been inoperable.

 

They would want to continue with the pregnancy unless they felt their baby could not give and...

They would want to continue with the pregnancy unless they felt their baby could not give and...

Age at interview: 28
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Mother' And we had to go back to the hospital I think on the Monday after that weekend, and tell them whether we wanted the amnio. I think by the Saturday morning I rang the GP in floods of tears. I couldn't stop being sick, I couldn't stop crying. You know, "Give me some pills, calm me down, I can't cope." 

And he just said to me "Look, you've told me Down syndrome isn't a problem for you, you've told me that the heart surgery has a ninety five percent success rate. What's your problem? Enjoy your pregnancy." And I think that's really what I needed to get on with the pregnancy. I was already so attached to him, and to be throwing up, and actually physically vomiting at the thought of not having my baby, that should've been enough to tell me that that's not an option for us.

How about you, [father]? I mean, these few days when you were having these discussions and thinking the unthinkable in a way - what went through your head?

Father' I don't know, really. It sort of, I was more on the, I think a termination - although we thought about it for a little bit, deep down I thought we were just never going to have one anyway, so I didn't know what all the major fuss was about really. I know it sounds stupid but...

Well, maybe it just means that for you [mother] it suddenly loomed as a possible choice whereas for you [father] perhaps it never really did.

Father'  Yeah, I just think that [wife] likes to talk about everything anyway and sort of discuss things through, but...

Mother' I'm a girl!

Father'  I just thought that we'd never go down that road anyway - and if we did then obviously we would've done, but we didn't, so...

Would anything have made you reconsider that, going down that road?

Father'  I suppose once we were told about the heart and the implications of the surgery, the percentage rates and everything else, if it had come back as really low and if I thought we'd been sort of like keeping him just for our sakes rather than for his best health, then we probably may have chosen a different path.

Mother' I can remember we were talking about as well, okay, if he was inoperable but also if he was unable to give or receive love, I don't think that I could've carried on with a pregnancy with a baby that just wouldn't understand love.

Another couple were told their baby had a serious chromosomal condition called Patau's syndrome, and was very unlikely to live for very long. Although they continued to hope during pregnancy that he might live longer than predicted, they knew his chances were not good. They described how their decision to continue with the pregnancy was based on both the baby's interests and their own long-term need to know they did everything they could. It was a relief to decide to let nature take its course, but also a time of grieving for the healthy baby they knew they were no longer going to have.

 

They continued the pregnancy because they needed to know in future they had given their baby...

They continued the pregnancy because they needed to know in future they had given their baby...

Age at interview: 39
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Father' Unfortunately there are no certainties in it because --

Mother' There was no certainties, you know. Nobody knew how long he would live, whether I would make full term, you know, at 20 weeks they said, 'Oh, you know, if you make 24 weeks, you know, you'll be classed as a stillborn baby'. And I made 24 weeks and it was very much of a thing where every week I was counting, that that was another week further ahead.

Father' That's right. Every day really that we got through, I mean, we would sort of go to bed of an evening and we'd turn to each other and say, 'That's another, we're another day closer'.

Mother' It was, you know, it was very much, you know, because we didn't know how long he would stay there for, and obviously the longer he stayed there the better chances he'd have had.

Father' Yeah. And there are a lot of, I mean, there are children who survive two, three, four, five, six years with trisomy 13. The quality of life question is quite a big one. People, you know, we've had people come to us and say, 'Oh, yes, but what quality of life is he going to have?'

Mother' He'd have had his own world.

Father' I think if that's, you know, if that's the life that you've got, then that is of quality, to us.

Mother' We would have done everything --

Father' Yeah.

Mother'  -- to have made his life and stimulated him despite all his problems.

Father' The whole thing, really from - I mean, we spoke about this, we went over to the local specialist centre, where we were sort of, they performed the amniocentesis, and the whole thing about it has been giving him absolutely the best chance that we could. 

It's also for our sake. You know, we were given our diagnosis in September and the baby was due around Christmas time. Now with the two older boys as well, we sat and we thought and we talked about this, and it's, 'Well, you know, is it going to be fair on the boys? Is, are they always going to associate Christmas with losing their brother or having a very profoundly disabled brother? How are we going to cope over the next four months?'  

And very, very early on we made a decision, or we formed the opinion that the decision we made wasn't what was best for the next four months. It wasn't what was best for the next four years. It wasn't what was best for, to an extent, what was going to be best for our two older boys. 

We knew that we were going to have to look ourselves in the eye in ten, twenty, thirty, forty years' time and be able to say to each other, 'We gave our son the absolute best chance that we could'. And that's really why I don't think we'd do anything differently. It's been hard. It's been - I knew at the start of this, I mean, I went off and read up and looked on the internet and all the various websites. 

We knew very, very early on after diagnosis that there wasn't going to be a happy ending here. What there could be was a slightly less bad ending. We had to try to salvage something from what was a very, very bad situation.
 

It was a relief to decide to continue with the pregnancy, but also a time of grief.

It was a relief to decide to continue with the pregnancy, but also a time of grief.

Age at interview: 39
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Mother' And we sat down and we talked, and we lay up in bed for hours trying to get our heads round the whole thing. And I think we'd basically both come to the same conclusion, that we wanted to carry on. And I think that was the first time I'd slept then for like a couple of weeks. And we woke up in the morning, I felt as if a big weight had been lifted off my head. I felt it was all gone and...

Father' Just because I think we knew the direction we wanted to go in.

Mother' I felt very mixed up and very confused about what to do for the best, and once we'd made up our minds, that was it. 'I've made up my mind' and I was going to carry on.

Father' Yeah.

Mother' Some of the decisions later I do feel that the decision we made at the time was very easy. I felt sometimes as if we never really made a decision, we just waited for nature to take its course.

Father' Decided we'd let fate sort it out for us, abdicate the decision.

Mother' Where I think I would have always felt, 'Oh, but what if? What if they were wrong?' or 'What sort of quality of life?' or, you know, 'He could have lived, he could have had this, he could have . . .'.  Yeah, and I would never, ever have known, and I needed to know. I don't feel very, you know, heroic about carrying on. It was, I felt as if it was the right thing for us to do.

Father' Yeah.

Mother' It wasn't about proving that we could do this.

Father' No.

Mother' It was about what was right for us.

Father' Yeah.

Mother' Not what was right for everybody else or what was simple or...

Father' I mean, anybody else who's reading this or watching this in this position, who decides to opt for a termination, if that's what's right for them, then, you know, great. You know, you have to cope with these things --

Mother' Yeah, you've got to be able to live with yourself.

Father' -- how you're going to do it. I mean, it's, really it's, it's quite vicious because you've got two stages of grieving. We had, we grieved for our baby when he was born and died so quickly, but also in September when we were diagnosed we had to grieve for the baby that we thought we were going to have.  

We had three months of having to get used to the idea that he wasn't going to see his first day at school, you know, I wasn't going to take him to see football matches or motor races or whatever. And that's, you have to allow yourself to grieve for that as well. It's, and it is very, very difficult.

Last reviewed July 2017.
Last updated August 2010.

donate
Previous Page
Next Page