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Ending a pregnancy for fetal abnormality

Looking for information and support

Parents who have been told the baby they are expecting has a serious problem usually need time to absorb the news. Parents felt well supported when health professionals gave them time to absorb the baby's diagnosis and what it might mean for the future, and also when they were encouraged to talk about what their options were and what they might want to do.       

 

Her GP was very helpful and sympathetic and even though she couldn't offer any solutions she was...

Her GP was very helpful and sympathetic and even though she couldn't offer any solutions she was...

Age at interview: 43
Sex: Female
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In fact another person I spoke to very soon after the diagnosis, was I phoned my GP, and she said, 'Come and see me, I can't talk about it to you about this over the phone, come and see me now at lunchtime, just come at, come at 12 when my appointments finish'. And so I just went straight to see her and I was there till 1 and she was just marvelous, absolutely fantastic and you know across the road so I just, I felt like I did have a sort of friend in her and yeah she's wonderful. So I mean you know you get kind of dramatic about medical people when they do have a positive influence but yeah she was very helpful.

And she said just sort of helpful things like you know. I think she'd specialised in obstetrics and she was saying you know, 'Life on the obstetric ward is not all happy and pleasant it's horrendous at times as well and,' yeah and she asked me what I felt about abortion and she said, 'You know it might be heart one way and brain the other way,' and it was just, it was just so helpful. So it was almost like a, it was a proper adult conversation with someone who was away from it so they weren't emotionally involved but they were able to empathise and it was just so helpful. So she was brilliant. 

And yes she didn't have any solutions obviously [laughs], she didn't give me advice she just talked and listened and she was, I mean she also explained exactly what the process would be if I did choose to have an abortion, and how that would happen. And no one had really done that, so that was good. I mean ARC (Antenatal Results and Choices) was obviously able to provide that information but I wasn't, I didn't really want it in written form I didn't, wasn't at that point because I hadn't made the choice. But she explained to me what would be, what would happen more or less. That was also part of the, that was more a help, that wasn't part of the decision-making process. 
 

She found hospital staff very compassionate and helpful because they gave her plenty of...

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She found hospital staff very compassionate and helpful because they gave her plenty of...

Age at interview: 38
Sex: Female
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It was the next day that we had an, our appointment to the specialist hospital, and we went down very early in the morning and made our way to the hospital. 

They were very, very kind, very caring and very compassionate, and we went in for our scan very early. And the scan was videoed while we were there. And it was obviously very painful because the consultant explained that he wouldn't talk, he wouldn't say anything because he was trying to concentrate.  

So that, that time was very scary because we really didn't know any details and we wanted to know. And we wanted good news but really in our heart of hearts knew it wasn't going to be good news. And when we came out of the scan, well before we came out, the consultant was able to tell us that he had some bad news and he needed to go and explain it to us. 

So we were then taken into another room where we had somebody supporting, a counsellor supporting, and the consultant. And we were broken the news that our daughter had hypoplastic left heart syndrome, but there were also some other complications as well.  

He went, he used, the consultant used diagrams and lots of literature to explain what her condition was, what it would mean, what her life expectancy would be like, what her quality of life would be like. There was lots of information and because we were in a state of shock obviously, it was very difficult to take it all on board, and there were lots of questions that we had thought later.  

And it was kind of information overload but necessary at the same time. But they had lots of time for us - they had as much time as we felt necessary -and I think we were probably in the office nearly an hour with them going through everything. 

And then after travelling home and reading, re-reading and then trying to work it all out we did go on, we used the internet for information as well to find as much information as we could on her condition. We found a very useful website that showed children who had gone through operations and had survived, which was very interesting for us. And it was a case then of getting as much information as we could. 

And the very next day when we still had questions we were able to phone them at the specialist hospital and they were able to answer our questions for us. So they were, they were very, very helpful and very compassionate and very kind to us. 

However some parents left hospital feeling that they hadn't really understood what doctors told them because they were 'in shock', and yet they felt they needed to know more about the baby's problems before they could decide what to do next. 

 

She didn't know what questions to ask when she was at the hospital appointment and ended up...

She didn't know what questions to ask when she was at the hospital appointment and ended up...

Age at interview: 39
Sex: Female
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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?'

And then the other, the second port of call was ARC. So they, I had their address, the hospital actually gave me a booklet, which I read. It was very informative and basically I got a lot more of information from there than actually talking to the consultant. And also I called them, the day, I called them on the Saturday, or maybe even Friday night, I think it was the same day. 

I went home and I said, I phoned them up and they provide names of people that volunteer to talk to you - people in the same situation and pretty much they had children with the same abnormalities or they had terminations because of the same abnormalities - so I called one of these women, and again, she was great because she told me exactly what was going to happen in hospital, and all the practical stuff, what to take, what to do, you know. And again, she was a lot more useful. So that, you know, that's the information I had when I went off on Sunday morning.

Many people found support groups a helpful source of information and support (see 'Support groups') and some were given leaflets about support groups by hospital staff, others were not and searched for more information by themselves. 

Almost everyone we interviewed who ended a pregnancy during the last 5 years used the internet to find out more about the baby's condition - 'you become an anorak' one woman said because 'you want to be sure you've looked at every single avenue'. 

 

The internet helped him think what questions he wanted to ask his doctors and also gave him...

The internet helped him think what questions he wanted to ask his doctors and also gave him...

Age at interview: 41
Sex: Male
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Yeah, we supplemented, we wanted to go in armed with all the questions. That's why you know, as I say the internet is a wonderful thing, you look it up and yeah I mean I'm sure there's false information there but it arms you with the questions that you are going to ask the consultant at your next appointment, because you want to know why. You know you obviously want to collect all this data and of course you have all the emotions going through your head, you're data gathering, it's almost, it takes over your life you, you're just looking at everything, yeah okay so this is, you know this is there so that's caused that and, you know, that's what you do. And it's sometimes better to do that than deal with your emotions at the time.

Do you think that's what happened?

I'm sure, I'm sure part of it, part of it is. It's almost, it's almost like you're helpless - you can't do anything so the only thing you can do is to do that and I think you do that to make it better, you know.

 

She used a medical website to find out more about Walker-Warburg syndrome which made her feel...

She used a medical website to find out more about Walker-Warburg syndrome which made her feel...

Age at interview: 40
Sex: Female
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There are 3 syndromes but the most common one and the one that effects people of my racial background, is this thing called Walker-Warburg syndrome which is also recessive, so it gave us a 1 in 4 chance of the baby being affected. 

The letter didn't say all that. The letter just said that a condition which may affect the risk of a future baby being affected in the same way, didn't say what the risk was. 

And so I then spent a day not being able to get hold of the author of the letter because she was off at conference or something. And then finally spoke to a fantastic nurse, genetic counselling nurse who was very well briefed by her boss on everything, and so knew all about me, which was great. When I got hold of her she knew who I was, she knew about the baby and was able to tell me everything she knew about this, what is an extremely rare condition - she hadn't ever met anybody with it before  and in fact the consultants looking after me hadn't ever looked after anybody with it before - but it was reasonably well documented.  

And so they told me about it and I'm not even sure I knew I was pregnant then, I might have just found out and they said, 'Come in and talk to us about it.' I arranged to do that the next week and in the interim I'd searched Medline and the net and everything about this condition and went there like, you know I was like an expert. The geneticist was like, 'Oh, did you? Tell me more, oh, really, does it?' And then she'd found a couple of articles herself on the web but not as much I [had], you know, I'd spent a week doing nothing other than find out about this condition.  

Most people used the internet to find support groups like ARC (see 'Resources') where they could find out more about ending a pregnancy, as well as groups like Little Heart Matters where they could find out more about the baby's condition. (See 'Support groups'.) 

The internet also led people to US websites which showed parents who had kept their babies and were still caring for them at home. People responded differently to these sites - several found them useful, others had reservations about them. 

 

She realised that some websites only presented positive stories about babies born with...

She realised that some websites only presented positive stories about babies born with...

Age at interview: 38
Sex: Female
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When we were trying to find out as much information about [baby] we used the internet. And the most useful website we found to tell stories of families was, it was an American website called 'A Heartbreaking Choice'. And some of the information was a bit over the top, but at the end of the day for us it was the most useful website because it told us about families and how they were coping.  

Other, that, no, that website was different, wasn't it? That's the one that, that's the website we used for when, when we decided to end, we, no, we might have used it as well, but when we decided to end the pregnancy we used 'A Heartbreaking Choice'. The other one was 'Left Heart Matters'. And I think there might have been another one. Because I remember the families being American, but it was more to do with, it was about hypoplastic, and it showed the stories of the families and how they'd gone through surgery. And there were lots of photos of children in hospital beds recovering and looking well. And both my husband and I were trying to look with an open mind, but realised that all these photographs were not always a happy story, in that that child had gone through a lot of heart, heartbreak and misery to actually get to the point where they were able to perhaps take a bottle, and they may have been 18 months old. 

In fact I remember one case where they, the mother was really excited because her child was 18 months old and had taken her first bottle. And we realised then, that it's not just a case of a quick fix, that there is a lot to be involved in this type of surgery, and that some of these stories are glossed over. And because parents are, who decide not to end their pregnancies, they will fight all the way for their children and they - we all do - but they want to show you the best clips of the best times. And we realised that is, if this is the best clip of the best time, then there's a lot of grief gone beforehand. 

So to be open-minded about what we saw. But it was also quite useful to see that. 

A few people got lost on the internet, ending up on specialist scientific sites they couldn't understand or that weren't relevant for their baby. One man said he worried that his wife used the internet compulsively to search for positive stories when he felt she should accept nothing could be done for the baby.

 

She used the internet to look up medical terminology but she found it didn't help her understand...

She used the internet to look up medical terminology but she found it didn't help her understand...

Age at interview: 38
Sex: Female
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Well we were given all the medical terminology on the report, so we went, rushed straight home and looked up as much as we could in medical books and on the internet. 

And in some ways that was quite helpful because it gave us something to focus on and gave us something to do -you feel you want to do something practical and positive to make something good out of the situation - but in other ways it was quite negative in that [pause] we couldn't find out what was wrong with the baby by looking things up on the internet, there was such a complicated array of problems it, and there wasn't a specific syndrome or, that everything fell in to. So we ended up befuddled in many ways, that is it a heart problem that's led to, or is it a genetic problem that, that's led to this.

We probably ended up more confused, in medical terms by all the information we found and, and it amazes, having looked up all the things that can go wrong in a pregnancy, I mean its amazing it all goes right ever, its just [pause] you know so many possible ways that a pregnancy can go wrong at the different stages and the different outcomes. 

But it kept, all that first week it kept coming back, I kept coming back to the comment at the end of the report that 'the outlook is very poor.'
 
 

He worried that his wife was using the internet to search for positive stories.

He worried that his wife was using the internet to search for positive stories.

Age at interview: 41
Sex: Male
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When my wife came back and started looking on the internet, looking up all the words, I didn't really like that. She always does that when there's a new problem or something, but this went on for a long period of time, looking up things and finding all these horror stories. And for me, I was, in a.. I was, my attitude really was, 'Ignorance is bliss'. And I didn't want to know any more than I had to know. And looking at, hearing all these stories - especially stories about how people with this problem had gone on and had, and the baby had been born and lasted a few days, a few weeks or something - that, it was, I wanted it to be no chance of going full-term. 

And when the doctor initially told us and was describing the problem and what was happening, and he would say something like, 'Yeah, there's no chance of it going full term'. And I thought, 'Okay, you've said enough. That's right, I want to go now. I just know that there's no chance, and this is what we're going to do'. I didn't want [my wife] to keep pushing and saying, 'Well, is there any chance of it being okay? I mean there must be some chance?' And I didn't want there to be any chance at all. I was much more comfortable with it being cut and dried, because it was easier. 

A few women were grateful that doctors had searched the internet for them, particularly when the baby's condition was so rare that little research had been published and there was no relevant support group. For those expecting a baby with an inherited disorder, genetic counsellors and specialist nurses were said to have provided invaluable advice and support. 

 

Her consultant looked up Fowler syndrome on the internet for her but only found a paragraph about...

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Her consultant looked up Fowler syndrome on the internet for her but only found a paragraph about...

Age at interview: 22
Sex: Female
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And basically he said, you know he tried to get more information from the books, from the internet, all you could get, my consultant, was one paragraph about the syndrome, and he was like he showed me the paragraph. He goes, "I was up all night on the internet, trying to find out about the Fowler syndrome", and he couldn't get anything, just that one paragraph. So they phoned up the genetics department at the hospital, and that's where they found out a bit more about it. They don't know much about it really, so they sent me for genetic counselling, and through the genetic counselling, that's where they are going to try and find out if there are any ways of diagnosing Fowler syndrome in the future - they can't do anything now. So it's just basically the Fowler syndrome, it's - well it says, from what information we had it's lethal in newborn babies, and I've been told none of the babies that have had Fowler syndrome have survived, no-one has survived. It's to do with the brain - lots of fluid in the brain, and having the stiff limbs.

People often needed different kinds of information and support at different times - for example several people lost confidence in their decision when they read or heard misleading stories in the media.

Some people felt they already knew enough about the baby's diagnosis because of their nursing or caring experiences to make an informed decision. Others said it was helpful to get more directive advice from friends and family with medical expertise who were not involved in their care. 

 

Though she made contact with the Cystic Fibrosis Research Trust she and her husband found it more...

Though she made contact with the Cystic Fibrosis Research Trust she and her husband found it more...

Age at interview: 45
Sex: Female
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We also gathered very quickly, we got in touch with an organisation called the Cystic Fibrosis Research Trust, I'm not sure what it's called, I think it's called that now. And they put us in touch with other parents who had children with cystic fibrosis, which felt very strange talking to somebody who, with a child who had it when we were at the point of a decision of, the option of not to continue with the pregnancy. Because the actual gene for cystic fibrosis and the ability to test it had only been available for a couple of years, so these people we were talking to this had not been an option, they did not know that their children had cystic fibrosis until they were born. 

So I think we had, just had to put that on one side and try and find out all the information that we could. We are fortunate in that we have a friend who was a, a consultant paediatrician who had a lot of understanding of what it was and so was able to explain it to us. But we were fast realising it, and it actually was said to us later that medics will say one thing to somebody who was expecting a baby with it, about what it means, but would say very different things to somebody who was born with, had a baby who was born with it. And I think what we realised at this point though was that if we'd found out at birth that the baby, we would have got on with it, we would, you know, obviously we wouldn't have been, it would have just become part of our lives and this child's life and... But we had the, we had, were faced with a choice.

The Royal College of Obstetricians and Gynaecologists (RCOG) have produced a report on ‘Termination of Pregnancy for Fetal Abnormality in England, Scotland and Wales’ (May 2010).  Within it are a number of recommendations for the counselling and support of women after a diagnosis of fetal abnormality. The following is a quote from their report:

The decision-making process for women and their partners after the diagnosis of fetal abnormality is a difficult one. They must try to absorb the medical information they have been given, while in a state of emotional shock and distress, and work out a way forward that they can best live with. In such sensitive circumstances, women and their partners must receive appropriate counselling and support from the healthcare practitioners involved. All staff involved in the care of a woman or couple facing a possible termination of pregnancy must adopt a nondirective, non-judgemental and supportive approach. The use of appropriate literature and the availability of help from non-directive external agencies, such as Antenatal Results and Choices, is extremely helpful.

After the diagnosis, the woman will need help to understand and explore the issues and options that are open to her and be given the time she needs to decide how to proceed. She must not feel pressurised to make a quick decision but, once a decision has been, made the procedure should be organised with minimal delay. Although usually there will be no time pressure put on her decision making, there may be occasions when the pregnancy is approaching 24 weeks of gestation when, because of existing legislation, a rapid decision will have to be reached. In this instance, the reasons must be sensitively outlined and the added distress this may cause acknowledged.”

Last reviewed July 2017.
Last updated June 2014.

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