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Ending a pregnancy for fetal abnormality

Support organisations

Discovering that there is a problem with the pregnancy, and facing the choice of whether or not to end the pregnancy can make women feel isolated. Women may feel they are the only ones who have faced such experiences, and that other people, even close friends, cannot understand what it feels like to be in their shoes. Help and support from friends and family may not be enough for some women - particularly those who fear others will judge them or misunderstand their decisions. 

Support organisations dedicated to pregnancy and different kinds of fetal anomaly can be vitally important to women who feel they need information and contact with others who have gone through a similar experience. People used them in different ways and at various stages of the process of ending the pregnancy.

 

She was given a booklet about how the termination process would happen which told her things she...

She was given a booklet about how the termination process would happen which told her things she...

Age at interview: 38
Sex: Male
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The specialist in London 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, 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 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 found the loss of her baby difficult to cope many months afterwards and said that going to a...

She found the loss of her baby difficult to cope many months afterwards and said that going to a...

Age at interview: 52
Sex: Female
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But I know I met up, again going back to your question about help, after about a year I went to a group which was run not far, which was based with ARC (Antenatal Results and Choice). Just a few people who'd got together who'd all been in a similar situation and we just met together once a month. And I found that very helpful. 

I found, the first time I met up with people from ARC, they had a regional meeting here. I think that was about 10 months after I'd had a termination. And that was a huge step forward for me because I sat in a room with a lot of other people - all of who'd done something along the lines of what I'd done - and they were all lovely people and they were all very upset and very sad. And I was one of them. So it, you know I couldn't feel towards them as I felt towards myself. And that was incredibly helpful, really helpful. 

And going to that, it was after that that I went to the, the group that started after that meeting and I found that really helpful. 

Not everyone wanted to be actively involved with a support organisation or local support groups, though most people we talked to had made some contact with organisations including SANDS (Stillbirth and Neonatal Death Society), the Cystic Fibrosis TrustNCT (National Childbirth Trust) and ARC (Antenatal Results and Choices). Several women said they hadn't wanted to talk to anyone other than their partners and health professionals about ending the pregnancy, though several found they needed some kind of external support after the termination had happened. 

 

At first she didn't want to talk about her baby or what happened to anyone else and felt that a...

At first she didn't want to talk about her baby or what happened to anyone else and felt that a...

Age at interview: 38
Sex: Female
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I've never been to any meetings. They gave me two telephone numbers of people who lived in the area who'd been through similar experiences, but I didn't ring them. 

I don't know, but I just don't find it much of a comfort that other people have been through it, I don't, it doesn't help me in any way that other people have had the same traumatic experience. 

I suppose it might be helpful to hear that they've carried on with their lives and got on with things in a day-to-day way, but especially soon afterwards, I was just, I wouldn't have been able to speak to anybody about it. I certainly wouldn't have been able to sit like I have now and had a conversation, I would have just sobbed uncontrollably.

For many women who decided to contact or join a support organisation, the most helpful part was being put in contact with others who had gone through a similar experience. Speaking to other women on the phone or by email, and being able to ask questions about what it was like to live with a disabled child for instance, had helped some reach a decision about ending the pregnancy.  

 

She used a US website to make contact with other women who had ended a pregnancy after a...

She used a US website to make contact with other women who had ended a pregnancy after a...

Age at interview: 38
Sex: Female
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We've written a book, a very simple booklet for my daughter. There's lots of things that are ongoing and I, also a friend through the internet website, A Heartbreaking Choice, because when we'd lost [baby] that was my outlet for my grief, and every night for at least 6 months, every night I either wrote or I read emails from other people who'd gone through the same situation. 

And there was an American lady, same job as me, same due date and very similar circumstances. We grieved together and then I just emailed her personally. And to this day we still email each other about our children. And it's really nice that we've got that from it. But that was, my main support was that website. And in fact if that website wasn't there I'm not sure how I would have dealt with it. But that was my way of dealing with it. 

So you'd recommend that to other people?

Yes. I believe ARC (Antenatal Results and Choices) now have their own version. Because I was emailing people from all over the world and there's a lot of American ladies and obviously the procedures can be different. And perhaps got a bit more in common with some of the, some of the people from ARC if it's just British people. 

But having said that was my, every night it was something I needed for myself, to help me through it, and I would recommend it. Because there was nobody judging. There was, some nights I would just go and read their email and I'd think, yeah I've felt like that. And then one night you might think, 'actually I feel like I can help you here'. And you might email back and give a little bit of support.
 

She found ARC (Antenatal Results and Choices) helped her at several stages particularly in the...

She found ARC (Antenatal Results and Choices) helped her at several stages particularly in the...

Age at interview: 43
Sex: Female
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Well I found ARC (Antenatal Results and Choices) really valuable all the way through, but especially during that decision-making period just because I do think it's a really sort of secret, it's like a hidden thing that happens in society that does not ever get talked about. And so ARC kind of gives you a channel, a place to go to where you know there may be other people who are involved in the same thing. And it's only those people who can really understand what it is you're going through.

And you went to meetings and so on?

I went to one meeting with other parents, that was probably a few months after the termination. And I found it was good but I wouldn't want to do it more than once.  I kind of, you need to move on as well you can kind of, I think there's a first 6 months or so when you're just totally immersed in everything that happened to you, and you want to talk about it over and over again and you don't actually get the opportunity to do that very much. So to be able to do that with other parents who went through the same thing was very, very liberating. But after maybe a year you don't need to do that anymore maybe or, I also think it kind of shuts off after a while, you just think "Okay, done that one.' 

Contact in general - whether through a helpline or informal networks of other parents - helped many women cope with their grief in the weeks and months after the pregnancy had ended. Some women found they needed to talk about the baby and their feelings to someone other than their partner, and had valued being listened to by someone completely unrelated to them.

 

She felt she shouldn't grieve for the baby she had lost when she had another healthy baby alive...

She felt she shouldn't grieve for the baby she had lost when she had another healthy baby alive...

Age at interview: 43
Sex: Female
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And that's how it still is, you know, there's still something missing, but not to the point where you can't live, you know. I do, I have a wonderful life, I really enjoy life but there's always going to be something missing I think. But when I was about 4 months, when she was about 4 months old, I remember sitting there crying and thinking, you know, 'This just isn't right'. I didn't think I was depressed at all, I just thought I was very very sad. 

And I rang ARC, (Antenatal Results and Choices now - they were SATFA at the time, which is Support Around Termination For Abnormality), and I'd had a little bit of dealings with them in my work, only really referring people onto them. And I remember phoning up and saying, 'I just don't know what's wrong with me but I'm just desperately sad'. And I told them why. And it was like this 'light-bulb moment' and this woman said to me, 'Well, you've lost a baby'. And she was so matter-of-fact and she said, 'How do you expect to feel?' And I thought, 'Oh, you're right'. And it was almost somebody gave me permission to be sad and to grieve. And I don't think anyone had done that before, or I don't think I'd allowed anyone to do that maybe. I was, I'm very much a coper, and I was very much, 'Right, you know, this has happened. I've just got to sort it'. And it was, it was very, it was a very good moment, to kind of think, 'Okay, I'm allowed now'. 

 

ARC (Antenatal Results and Choices) gave her people to talk to when her husband didn't want to...

ARC (Antenatal Results and Choices) gave her people to talk to when her husband didn't want to...

Age at interview: 37
Sex: Female
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But obviously I was, [husband] didn't talk about [baby] very much afterwards. He found, finds it very difficult, and still does now, so my lifeline was ARC basically, so I did have contact with people that had experienced the same. And I accepted that, you know, people deal with it differently, and [husband's] not really a talker. So that was fine. But I just felt very, very empty and this huge void, you know, and I just longed for, I remember I went back just before her funeral and held her two or three times at the funeral directors, and when I held her I just felt right, you know, I felt complete again, that was the thing. 

So then I started reading the newsletters from ARC and there was lots of positive stories in there from ladies, who had gone on to have other babies. And this just sort of put something in my mind, because I hadn't even thought about it, I was definitely not you know, and I mean I was thinking to myself, 'Right, I've just got to accept what's happened and, you know, I did what I could for her whilst I'd got her and blah, blah'.  

And now I'm sort of involved in different things, getting more involved with ARC becoming a networker there, to help other Mums that have got decisions to make or have already made the decision to terminate. And if I can help others like they did me, it was, at that time it was very important and it always has, it has been since [baby], that ARC have been there and I don't ring to speak to people, I just, just reading the newsletters is enough for me, just to read all the positive things that can come. 

And I find that getting more involved with ARC, it just keeps [baby's] memory alive for me, because as the time, I find as the time passes, people speak about her less. Whereas if somebody's actually been on earth, basically born, there's memories of them all around, whereas with [baby] there wasn't. I've got the biggest memory of her, I felt her moving, you know, nobody else did. So that to me, I, it, there's only other mums that can understand that that have been through the same thing. 

 

She used to be in contact with other women by email every day but no longer needs that amount of...

She used to be in contact with other women by email every day but no longer needs that amount of...

Age at interview: 29
Sex: Male
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It's easier for me to talk about this because I've been dealing with ARC, since it happened. And I receive emails every day, from the support group, which for me has, have been a life saver, and I don't - when it first happened I used to write, probably every other day emails to all these other people and get replies back. But now I don't feel I have to write all the time. 

I read them every day, and take in things, and when somebody new joins I can totally see where they're coming from. But it's just been so helpful for me. I've been to some meetings, which have been really helpful, and I think if ARC hadn't have been around then I don't know where I would be now. It's definitely been good for me. 

Women liked being able to engage with support groups as and when they needed to.  Some were reassured that support groups were there and could be used if necessary, others appreciated being able to get advice via the helpline and getting answers to questions about specific issues such as the termination. Many women particularly valued ARC's newsletter because they related to various personal stories and letters they read there. One or two women had taken their involvement with ARC a step further and had become members of their trained telephone support network.

Men and support organisations

Most men saw support groups as avenues of support for their wives/partners and appreciated the information they provided. Some women said that they had persuaded their partners to attend at least one support group meeting with them after the termination. Some men we talked to said that they had found meetings quite helpful initially but that they didn't want to have long-term involvement. A few men had joined ARC men's forum.

 

His wife's experience of ARC's email forum has been very positive but he found it more helpful to go to a meeting for ARC members and hear other parents' experiences.

His wife's experience of ARC's email forum has been very positive but he found it more helpful to go to a meeting for ARC members and hear other parents' experiences.

Age at interview: 38
Sex: Male
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What has happened is [my wife] joined the ARC (Antenatal Results and Choices) forum on through the internet. And I joined the men's forum as well, there's a men's forum, which is so under-used it's, it's not true - I think it's bloke thing [laughs] - we don't like to talk about it as much.  

But I know my wife has found the forum to be very, very useful, and she's met there, there's, there's one other woman particularly she's met has become good friends with. And there are other people that she's become friends with, not quite so good friends with but friends with, because they can understand what she's gone through, what we've through. 

And the, the parents meeting we went to in [city] with ARC was very useful for both of us just to sit there and talk to other people who've gone through very similar or the same situation, and to understand that we're not going mad, and to understand that everything we're feeling emotionally is normal. Because you do start to doubt whether or not you're normal, you do start to doubt you, your sanity because, you know, 'Why am I? It's so many months down the line, why am I still feeling like this?'.
 

Feels that the peer support was good for his wife but that men seem to find it much more difficult to communicate with each other about their emotions.

Feels that the peer support was good for his wife but that men seem to find it much more difficult to communicate with each other about their emotions.

Age at interview: 32
Sex: Male
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ARC (Antenatal Results and Choices) hasn't really, ARC's been there mostly for [my wife]. I've used them and used their website to look at other people's experiences, and I've used their newsletters which have been really good to read about other people's experiences and stories and things. [My wife's] used them a lot more than I have because they a very active email group, a women's group, and they send each other messages all the time, about what they are going through what they're feeling like.  

There's also a men's group but it's not very active, there's about 20 people on there and there's about one email every 2 months or something [laughs] because men, we can't put, write down emotional stuff like that very well, you don't get a lot of response. So it's more, it's more been helpful just to know there's people out there, actually its more been helpful to me knowing [my wife's] getting some support outside of me and her immediate family. And the more support she can get from ARC and other groups, the better for her and the better for me really. So she has, she's had support from ARC and she met up with some, some of the other mothers from ARC as well and you know she sees them on a regular basis, and that's really good for her.

Last reviewed July 2017.

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