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Ending a pregnancy for fetal abnormality

Ending the pregnancy for family & personal reasons

Making the decision to end a pregnancy faced parents with a choice many had never imagined having to make. Some said that making the decision was the hardest thing they had ever done, and for many it was a turning point in their lives. Several described how they had been faced with 'a great moral dilemma', and explained how they had dealt with their guilt. (See  "Coping with bereavement'.)

 

He found making the decision to end a pregnancy was like 'playing God'.

He found making the decision to end a pregnancy was like 'playing God'.

Age at interview: 41
Sex: Male
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I, think it was talking to my wife at the time was you know obviously at 22 weeks you can start feeling the baby inside you, and I think that was, that was very difficult you know, knowing that you were going to actually, in effect, kill this child. You know, having seen another child grow up normally, to actually sort of say, 'That that's it, you know... you're not going to make it,' - it's almost like playing God. It's saying you know, 'Okay I have the power to end that'.

Parents took many different factors into account. They talked about weighing up ethical, moral and religious beliefs as well as thinking about how they would manage the demands of full-time caring for a disabled baby and child.  We have separated people's thoughts about the baby into a companion summary 'Deciding to end the pregnancy for the baby's sake'. Here we consider what people said about the decision in relation to themselves and their families.

The decision made many people think deeply about how they wanted to live their lives and what they wanted for their families. Most people had never imagined having a disabled or extremely sick child, and found when given the choice that ending the pregnancy seemed like the best option for them and their families. 

 

He had always imagined having a perfect baby and feels that he and his wife faced an impossible...

He had always imagined having a perfect baby and feels that he and his wife faced an impossible...

Age at interview: 32
Sex: Male
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The thing is when you, well it's an impossible decision - well it's not an impossible decision but it's a horrible decision, you don't want to make it, you don't want to make it at all. It's a horrible decision to have to make. But what you want to have is concrete facts about what's going to happen, what would happen to your baby if it went full-term. You can't get those facts. So you make a decision really in the dark.  

At that point, in, on that point, on that Monday, we didn't have to make a decision then anyway. We could, we could wait because we're having these, more tests to try to work out what was going on. So I think we knew, in the back of our minds we knew that termination was by now a, very much a possibility. 

I think both of us... were so looking forward to a baby, we both wanted to have the perfect baby, we didn't want to have anything wrong with it.

Both of us, I think although we'd never talked about, obviously during the first 3 months of pregnancy we'd never talked about what would happen in this situation, and really I suppose maybe we should, but we'd never really talked about that especially. But I think both of us knew that we would probably decide to terminate if that, if this sort of thing happened. 

We're both of the feelings that we are... we can deal with abortions. We're not completely pro-life, we're quite happy to weigh up the options and see what's best. And we wanted to have this perfect baby that was going to be brilliant for us, and not have any problems. So I think both of us knew that we could go through a termination, and that's probably what we'd choose if we had any problems with the baby without either of us ever talking about this before.  So I think we gradually assumed, we gradually assumed that this what, this is what might have to happen. 
 

Feels that her baby's heart problems would have affected every aspect of family life.

Feels that her baby's heart problems would have affected every aspect of family life.

Age at interview: 34
Sex: Female
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And we just felt that would be absolutely devastating to get to know your child and to love them and so. We wouldn't have been able to do anything normal with them anyway, because babies that have congenital heart problems are very poor at feeding, their health is going to be affected. They're not going to be able to run and chase a ball and the impact that would have had on our elder child as well. To say, 'Oh sorry we can't go out because the baby is poorly. You can't run around because the baby is going to get out of breath.' Just seems completely unfair to ourselves. One of us would have had to stay at home to look after our eldest daughter. The other one would have had to have been at the specialist hospital, 50/60 miles away. You can't live your life like that. 

We being, one being at home with the eldest would be thinking, 'Oh I should be at the hospital with the baby needs me'. The one at the hospital would be thinking, 'Well I want to be with the baby because they're so poorly, but I feel torn in two because I should be at home with my partner and the eldest child.' The whole idea of trying to have some kind of normality... we just couldn't see any future in it really. 

It seemed unfair to everybody, and especially the baby when you think that it would be great to have the baby to be able to see them and hold them and cuddle them. But just then the thought of turning round when they may be 8, 9, 10 saying, 'Sorry' - if they get to be that age - 'You might not have many years left'. It just seemed too devastating and too unfair on them to carry on. 

Those who had always believed that they would never terminate a pregnancy explained that their views changed once they were faced with the decision. Even when people had already talked with their partners beforehand about the possibility of ending a pregnancy, they found that when they faced the decision for real it was a 'different ballgame'.

 

Her views on termination changed when she realised that her baby would not have survived for long...

Her views on termination changed when she realised that her baby would not have survived for long...

Age at interview: 31
Sex: Female
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I mean, at first, when we first discovered that, you know, there's a problem with our baby, my instant reaction was 'Well I'll be going to term, because there's no way I could sign a consent form for a termination'. That was my instant reaction, but then as time goes on, and we agreed we'd talk about it every day, that we must sit down and have a conversation about it every day, and you know, agreed that we weren't, you know, we would just talk if we needed to say something. 

And I think as time went on, and you are just, you know, looking into it more, your initial emotional reaction changes, and you start actually thinking about what the implications are for the baby, for our daughter, for us. 

And I mean, our main - I mean obviously this is over several days, you know - we'd got to this decision and within this the amnio results came back. I think we had to wait 10 days, and the consultant who'd initially scanned us rang me with the results, which confirmed that, yes it was a T13 baby, which was actually quite reassuring because it gave us an answer. You know, your baby has got these abnormalities because they've got a chromosomal abnormality. 

Plus it meant I felt that we could make a decision without sort of having to look into likelihoods and statistics, and whether they'd be fit for surgery at birth and all those kind of, this was, it was almost like saying, you know, your baby, unfortunately, is going to die. They'll die when they're born, and so we were, if you like, the decision was taken out of our hands. I felt it made it easy to make that decision. 

 

She explains why the decision was much harder to make than she had expected.

She explains why the decision was much harder to make than she had expected.

Age at interview: 33
Sex: Female
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And I think we knew in our hearts of hearts what, what we would do, but it was sort of getting more facts. I wanted to find out more information so I was onto the internet and I was onto the midwife and I was on to the GP and other various people I knew, off down to the library and all this in the space of about 2 hours. 

And then we just decided that looking at the whole situation... I mean, it would mean that I would not be able to work, which I know isn't, it's perhaps a very selfish thing to say, but financially I cannot afford not to work, or I couldn't at the time. The effect it would have had on our other daughter and on the marriage. I mean we were looking at the whole picture. 

And I'd actually got an article out of a nursing magazine that I'd got off my sister about a child that had gone through all the different stages of operations, and I sort of read it and I, and I just knew that there was no way that we could put a child through that kind of suffering or ourselves, you know, for that matter. And so we decided we would go ahead with the termination. 

Can I just ask you, was that a very, was that a difficult decision to make?

It was, it's one of those things that I think, like I said, we'd discussed it that, yeah, that was what we would do, but with actually being faced with that decision was a different ballgame, a completely different ballgame. 

And it was, I don't know, it, it was very surreal, to be perfectly honest. It was like, somebody had put to you a hypothetical situation and said, 'What would you do?' And then given you the real situation and said, 'Right, now act on it.'  

People talked about not being able to cope long-term with a disabled child and how it might affect their own health and well-being. Women were especially concerned about how the baby's future needs would affect their relationships with their partners and also with their other children. 

 

Describes the factors that led her towards the decision to end the pregnancy (her baby had lower...

Describes the factors that led her towards the decision to end the pregnancy (her baby had lower...

Age at interview: 43
Sex: Female
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This man comes in now, [laughs] finally. And we're in this little room where we've been sitting for about an hour or more than an hour by now and he sort of says, 'Oh I'm terribly sorry.' I think' [laughs], so anyway he was very pleasant when he finally appeared, but I didn't learn anything more from him than I'd already learnt myself by exploring all the obvious places to go. So I didn't really feel like it was, it wasn't really that worthwhile. It was still helpful because it kind of put us through this huge process of trying to get some information. 

And he did answer all my questions, there was a bit more that I learnt. He then dictated this letter to my G, no to the consultant who'd sent me to him in front of me. Now I know that's good practice normally, but for me it was like, 'oh just stop it because I'm desperately late, I really don't want to miss my play I just..'- it's like he's not got any idea that I'm trying to do this other thing it's just, it's awful. 

And I then I think I left, I raced back and I got there in time to see the play so [laughs] fine. But as I kind of in that, in that day I decided not to have the baby - because I don't blame him because it was just that that kind of - it puts it all in to words, that was it, that was what I couldn't cope with, because I knew what it's like to struggle with all this stuff. I knew that I could become the active parent, the kind of very involved person who pushes all the time for what's required. But I just decided I can't, I don't want it, I've got enough pushing on my own behalf. You know I've got a pacemaker, I've got all the drugs that I've got to take, I've, I'm going to get more breathless, I will need another operation in 3 or 4 years, and I choose not to do that. I'm just not going to do it. It's a completely rational decision on my part and that experience with that big hospital just confirmed it for me. 

So it's not their fault, it just confirmed it, because that is my normal experience, it's not an unusual experience. It was just slightly worse than usual. And I just thought 'okay, I've made my decision'. 
 

She took into account the effect she believed her baby's Down's syndrome would have on her, her...

She took into account the effect she believed her baby's Down's syndrome would have on her, her...

Age at interview: 29
Sex: Female
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I think to be fair to my husband it was more me and what I could cope with. Much as I love my husband and I, and we're a family, at the end of the day I think if you have got a child with a handicap a lot falls on the mother. And I think my main thinking was about myself and how I would cope. 

Already having a daughter who wouldn't have been much older, how I would cope if the child was handicapped, physically and mentally, and I also weighed up how it would affect a relationship with my husband and also my daughter. 

One worry was, if we proceeded that if anything were to happen to myself or my husband, it falls on my daughter to look after any brother or sister. And I was also worried that having a child with a handicap, mental or physical would mean my daughter would be slightly, not neglected in a physical or emotional way, but slightly pushed out on a day to day basis. 

So I, although my, it was mainly my own feelings on the, on the problem, I needed also to take into account my daughter and my husband, and how it would affect our family as a whole rather than just me although my, how it would affect me was a main consideration. My own view personally was that I wouldn't have been able to cope as a mother with a child that was handicapped physically and mentally. 

I think I was worried about every element, I was worried about how it would affect me emotionally as a person, whether it would drive me crazy to put it literal. How it would affect us financially I was working because we had to, I had to work at that point. My daughter was in a private day nursery and I didn't know what, if they would have the facility to take on a child with a mental and physical handicap. 

And getting day care or respite care is very difficult. So I had to weigh emotions for me, emotions for the family, financially, how it would affect us later on in life financially. It would be nice to move in the years to come, but if we weren't, if I was unable to work then financially it would be a struggle. 

Some parents talked about what kind of future a child with long-term physical or learning disabilities might have, and imagined their child in the context of a world that could be 'cruel' and 'tough at the best of times'. 

Parents talked about taking on a life-time's responsibility for another person who would never be able to look after themselves and what it would feel like to have to protect the child throughout his/her life. Many said they didn't know who would take responsibility for the child's care if or when they themselves had died. Many said they felt quite strongly that they didn't want any of their other children to have to take responsibility for a disabled sibling.

 

Her husband felt he would always have to be 'on guard' and protecting their child with Down's...

Her husband felt he would always have to be 'on guard' and protecting their child with Down's...

Age at interview: 37
Sex: Female
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He said that he would feel like he would have to protect that child for ever, because he's very very protective of our 6 year old now. And he said that he would just feel like he was on guard all the time. If anybody looked at them in the wrong way or, you know, and he said he c-, he said it wasn't for him, it was for the child. He just would feel like he was protecting that child on a constant basis, and it would just be too much pressure for him. And that he, and he thought that life was hard enough as a normal, healthy person, and to have added disabilities. 
 

Women who were told their babies would need surgery and long spells in hospital in their first months of life, said the strain of being separated from the rest of their families would be too much for them. 

 

She realised she would have to sacrifice her other children and her family for the sake of her...

She realised she would have to sacrifice her other children and her family for the sake of her...

Age at interview: 38
Sex: Female
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When we were making our decision it was difficult because having an older daughter, we realised that it would be a big sacrifice that I would be having my baby away from her. I would be spending a lot of time away from her and also you're bringing probably a very ill child into your family. 

But having said that, because it sounds very selfish, it's not black and white like that. Because it's not the whole picture of what we would, you know if it meant that our baby had had two or three operations and we could bring her home, and she could be part of our family and have, a life that she would enjoy with her sister, I would have pulled myself apart from my elder daughter for a year, if it would have meant that there was long-term joy and fun for that, for our baby. But as far as we could work out, that wouldn't be the case, and so it was another factor that, deciding for our family as a whole. So it did make a difference for us.

 

She and her partner felt that keeping their baby and coping long-term with her heart problems...

She and her partner felt that keeping their baby and coping long-term with her heart problems...

Age at interview: 34
Sex: Female
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One of the other things we also discussed about on holiday whether to proceed or whether to terminate, again with quality of life, was looking at our own relationship as well.  

Sometimes going through a traumatic experience can bring you closer together - sometimes it can tear you apart. And we also thought about and talked about the impact it would have if one parent was to stay at home, and the other parent would be in the hospital, whether at the local hospital or whether in the specialist hospital, and would we inadvertently blame each other if somebody wasn't there and something did happen and she, she did die before the other partner could get there.  

It's very difficult, and we felt that we are a strong couple, but we didn't want anything to jeopardise that over which we had control, and obviously terminating the pregnancy meant we had some control. And we've both come from broken homes, and we wanted to give our children a good stable basis and a good loving home. And to give that chance for our eldest daughter, meant that we chose to terminate the pregnancy, in the hope that we could have some more children, and carry on giving her the kind of upbringing that we wanted to have ourselves. 

Several people said that they knew mothers who cared for disabled children and who found it exhausting. Some thought that state support might be difficult to get when you needed it, and that taking care of a disabled child ended up being a lifelong commitment for the mother. People also talked about being too old to look after a child with a physical handicap, about living too far from specialist hospitals, and about not being able to afford to give up work to care for a disabled child. 

 

She has ended 3 pregnancies because of a genetic disorder and feels people should be more...

She has ended 3 pregnancies because of a genetic disorder and feels people should be more...

Age at interview: 43
Sex: Female
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And it is possible that babies that look quite ill can turn out to be, to have reasonable lives. But I think you need to examine your own resources, and think, you know, 'If the baby was disabled, how would we as a family cope? You know, how would we be able to manage that?' 

Because, you know, friends that I do know, who have had disabled children, it has had a huge effect on their lives, and on their marriages too, I have to say, very often. I know of many unfortunate cases of women, you know, their husbands have just had enough. And I think, you know, it's a lifelong commitment - very often a disabled child. You know, some people are really happy to make that, but I've always been very clear in my mind that I just wouldn't. I just, you know, I just couldn't make a commitment, a promise that we would as a family be able to cope with that. And then you're left with the, you know, the stress of putting them in a home whenever you want to go on holiday or do any, you know, it's just all too awful really. 

So I was lucky that I never had any real doubts about that side of it.  Even in spite of, you know, being relatively religious in some areas I just, I just thought, you know, those priests aren't going to be washing and turning this baby, you know, five times a night for the next 20 years, are they, you know.'  

You've got to be realistic about what you can do and also sadly what services are on offer. Because a lot of people have been very optimistic initially about what social services and educational services are on offer, and then the endless legal battles to try and get proper help for these children are just so draining emotionally, financially and everything. 
 

While some people acknowledged that others may think they had made a 'selfish decision', they explained that no one really knew what they would do until it happened to them. 
 

Last reviewed July 2017.

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