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...
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.
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...
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...
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...
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 the 'Resources' page) 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...
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...
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.
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.
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...
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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