Ending a pregnancy for fetal abnormality
Understanding the baby's diagnosis
For most parents, reaching an understanding of the baby's problems meant accepting what one woman described as 'the worst news possible'. Many parents found they were so overwhelmed by hearing that the baby had a problem that they couldn't absorb much detail about the diagnosis, and needed more time to think it through on their own. Others said they found themselves listening, but felt frozen in time, and simply didn't know what to do next.
She experienced a kind of physical shock when she was told her baby had problems with his heart ...
She experienced a kind of physical shock when she was told her baby had problems with his heart ...
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I was very strict with drinking but I might have had one glass of wine, so it's definitely that glass of wine that had done it. It, so you, you're going through all those issues with yourself, tearing yourself apart that you have been the one who's done this to your child.
Secondly you're coming, you're in shock but you've got to come to terms with the fact that there really is something wrong with your child - not somebody else's, not a textbook or - it's your baby that there is something wrong with.
And then thirdly you've got to come to that decision on what is best for your child and your family. And although you think you know what you want, you know there are so many factors involved in making a decision over somebody's very precious life that it's very very difficult.
And also having to, once you have made the decision you know that you have then got to go through and deal with the consequences of your decision for your family, for your child. And it is a very, very difficult time because all those thoughts and feelings and emotions are all coming together.
Plus, that I found I was in physical shock. And I mean can feel myself beginning to shake a little bit now because of remembering. But I know at the, when I was talking to consultants, physically shaking, not eating, not sleeping and just feeling very distressed and depressed.
She and her husband felt paralysed by shock when they heard that their baby had Edwards' syndrome.
She and her husband felt paralysed by shock when they heard that their baby had Edwards' syndrome.
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I think, we have talked about it - I can't remember exactly what he said about that - I think he was much the same as me. We were both just like, 'What?' You know, just, it was, it's severe shock. Its severe shock and, you're just almost paralysed by it. You just... you're just hearing words being spoken and they don't really make sense.
And she was good. She did, she just, I think she just said, 'Look, I'm really sorry. I know this is a terrible shock', and just remember sort of sitting there, sort of like, I can't even remember, I probably cried. I can't actually remember. I was just... I just didn't know what was going on, to be honest.
Some women said their first reaction had been an irrational guilt for having 'done something wrong'. Others said that the whole situation felt 'unreal', and that they couldn't believe the diagnosis really applied to their babies. Several women said that their partners didn't seem to have absorbed what the diagnosis meant and had taken longer to grasp what the long-term implications were for the baby.
She struggled to absorb all the information about her baby's diagnosis and explains she needed...
She struggled to absorb all the information about her baby's diagnosis and explains she needed...
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No, I don't think we did take it all in. I think we came home - even the leaflets and things - it felt like it wasn't, 'real'. It was just, and that there was so much information and, there was almost a sense of - not urgency but they wanted us to make decisions quite quickly - and I mean obviously medically they knew exactly what was wrong, and exactly, you know, what we were faced with - but for us, it was a huge thing to decide.
And I think they did want us to move fairly quickly on what we were going to do, and the implications for us as a family were, you know, I felt, we couldn't, I couldn't decide you know, we said to them there and then, that we couldn't decide that afternoon, what we were going to do with the pregnancy, because it was just such a shock.
And I felt that I didn't really know what it meant for the baby, although they'd told us all the information. Because there are different levels of Edwards' syndrome and, I didn't know enough about it to make such a big decision, because up until then we'd never heard of it, you know. Whereas I think with Down's syndrome we knew a certain amount I'd, I wouldn't say that I was, I didn't have a huge amount of information, but you know, I did know a certain amount about that, and what it would of meant for the baby. But Edwards' syndrome was we didn't know at all.
Explains that she found it easier than her partner to understand the baby's diagnosis because of...
Explains that she found it easier than her partner to understand the baby's diagnosis because of...
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I mean, his background is music, that's what he does. You know he knows a little bit about the what I do, but it's, you know, as far as, you know, he takes the humorous approach you know - I work with mad people and that kind of thing - you know, he'd read bits of the books but that was more about the kind of how big you are and you know, what to eat, and stuff like that.
And it's like he knew that it meant something was wrong, but he just thought, it was when he said like, 'Well we can just get a ground floor,' that I realised that he's all he thought it meant was that they'd be in a wheelchair.
I just, he was like, 'We'll cope, it'll be okay.' you know, 'We'll move. We'll get a ground floor, or sort out a nice house, somewhere where we, where we can get a wheelchair in.' And I just thought, Oh God you don't get it'. And I suddenly realised that everything that she'd said was based on my background and my knowledge so, me knowing which area of the brain controlled breathing meant that when she showed me that bit on the scan, I knew what that meant when that bit was deformed. But to him it's a bit of a head, you know and the head's a bit misshapen, you know, it didn't, it didn't register the significance of it.
You know when she's talking about shunting and things like that and me knowing the dangers of those kind of procedures, it didn't mean anything. It was just an operation and okay so they'd have to have a few operations. He, it, when it became clear that he thought he was going to get a child that couldn't walk, rather than a child that couldn't be anything. And breaking that down, trying to explain, I couldn't find the words. And he's talking about a second opinion and things like that, and they want us to go up to one of the big hospitals that has a specialist department. And that was all that kept going through my mind was, oh God he doesn't understand, he doesn't know what I know, he hasn't seen this.
Feels he hadn't fully understood the baby's diagnosis at the time because he was in an emotional...
Feels he hadn't fully understood the baby's diagnosis at the time because he was in an emotional...
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Parents' understanding of the baby's problems was affected by several things - whether they had ever heard of the condition before or knew anything about it, whether they knew anyone with the condition in question, and whether there was effective communication with those caring for them. (For more details about how knowing about the condition beforehand could affect parents' decisions see 'Deciding to end the pregnancy for family and personal reasons'.)
Several people said that once the reality of the baby's problems hit home, they began to listen more carefully to what health professionals were saying and how they presented information. Several people recalled how doctors had repeated certain key phrases about the baby which had stayed with them as they thought about what they would do next. Several people looked back on the first consultations and wondered if the baby's diagnosis could have been presented differently.
She says that the phrase 'the outlook is very poor' was repeated and describes how it helped her...
She says that the phrase 'the outlook is very poor' was repeated and describes how it helped her...
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My husband is more of an optimist than me, and it took him a lot longer. But all the following week I kept coming back to that comment 'the outlook is very poor' realising that, as I say, you're not going to write that on the bottom of a report for a pregnant woman unless its very, very serious.
Okay. Is that comment that was written at the bottom of the report did you see that by chance or did he use those words?
The consultant used those words, and it was on the report that I was taking home with me so I was meant to read those words, and although they were very hard to read, looking back at how the situation progressed from then, as I say it was at that point when I read those words that it hit, really hit home, how serious the problems were and I think I needed to know. I think it was the right thing to hear.
But all the lists of medical terms a lot of the words are ones you don't understand even if they explain that whatever it is means that the stomach is growing outside of the abdominal wall and isn't growing normally, it's still a medical term. You can't relate to it, but a sentence like 'the outlook is very poor' I could relate to it, it did what I'm sure it was meant to do which was make me realise how serious the problems with the pregnancy were.
She wondered with hindsight whether the consultants had given her an entirely balanced...
She wondered with hindsight whether the consultants had given her an entirely balanced...
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And in hindsight, that wasn't particularly factual information to have given me at that time, because knowing what I know now about the condition they thought that was, which was a very severe neural tube defect those babies can survive - typically with a very low and poor quality of life and typically not for very long - but they can survive, and you can even operate, although again, not particularly successfully. But there are other options than the options that were presented to me at that moment in time.
And I think, having reflected on that and discussed it with the consultant who I'd got to know quite well over the next 2 years, I believe that he imposed some of his personal views on whether or not you should proceed with the pregnancies where the baby is severely handicapped, and that's an issue.
But I do believe that, that for both of them, that both the consultants, because they were both very much in tandem with their viewpoint, that that was a personal view that a baby with that severity of illness shouldn't, shouldn't be born.
And I kind of very much went with that. And the reason why that is not a huge conflict is because I would have got there myself as well, and I was comfortable with where I went with that decision, but at the time it wasn't entirely, it wasn't a balanced presentation. And if I'd have, in hindsight, felt that I should have continued that pregnancy there'd have been a lot of anger about that because I wasn't presented with a, with that balanced view at that time.
But do you think they should have said?
I think that the things that were very clear from the scan was that the baby would have had a very poor quality of life if it had survived, and I think it would have been very fair to talk about about 'if', because a lot of babies with such a large encephalocoele don't survive but some do and some go on to survive for many months and have some life. And I think they needed to be, to be clear about that option, but to be honest about the fact that that was quite small, a small chance. And that wasn't, wasn't presented to us at all.
Says he didn't know what to do with the diagnosis initially and describes how he and his wife...
Says he didn't know what to do with the diagnosis initially and describes how he and his wife...
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So, it's like, what do you do? You know, how do you, how do you deal with that?
I understand that, from a doctor's perspective, if you go ahead and say on their recommendation you, if they told you that, this is what you had to do, and you had a termination and the child was a perfectly healthy thing, then that would be terrible, I mean that would absolutely be terrible.
They were doing they doing their jobs - they were very skilled in what they did - you know they did this every day. And I think as we were driving home, you know talking to my wife that's when it sort of sunk in. Because she made that point, she was saying that these people see scans day in, day out, and they can just go [clicks fingers]. The people in the original hospital, they, you could say okay they were trainee technicians or something that you know they knew a little bit, and they knew enough just to sort of say there was something wrong, but they couldn't tell you what was wrong, they wouldn't tell you what was wrong.
At the specialist hospital I think, as I say they, they do it day in and day out, they know their stuff you know, they're professionals, and yeah, our second visit our consultant there basically told us in no uncertain terms the outlook, the prognosis, was very poor and that's what made us decide to have a termination.
Several people vividly recalled consultations where a particular health professional seemed to identify with them and had acknowledged the enormity of the problems they were facing. Many people appreciated doctors speaking clearly and taking the trouble to explain the baby's problems using diagrams and pictures. Some found they understood the baby's problems better when health professionals explained things in everyday language rather than medical jargon.
They appreciated the friendly atmosphere at the specialist hospital clinic and trusted the staff.
They appreciated the friendly atmosphere at the specialist hospital clinic and trusted the staff.
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Mother' I don't think it made me feel scared, going to one of these clinics, specialist, specialised places, because I suppose never being in that situation before, well, you don't know what to expect, so for me to go there, it was different, but because I'd never done it before, I didn't really know what to think.
Father' It didn't feel quite like a hospital either.
Mother' No. No.
Father' I think that's probably because of -
Mother' The staff.
Father' The people, but the surroundings were slightly different. They'd tried to soften the blow of the purpose they were there for.
Mother' Bad news.
Father' And I think it sort of worked.
The words and language used by health professionals to describe the baby could be important because they helped to set the tone of consultations. Several people said the words 'fetus' (as opposed to 'baby') and 'abnormality' (as opposed to 'problem') had alienated them. Some found it difficult when health professional used clinical language to describe the baby and found it created distance between them.
She felt her consultant should have referred to her baby as 'the baby' rather than using the word...
She felt her consultant should have referred to her baby as 'the baby' rather than using the word...
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He had a very nice support nurse, who was very kind and considerate, but I felt he was very perhaps embarrassed or very unsure of himself. He, he didn't have any compassion for what we were about to go through at all. And he kept refer, referring to my baby as 'a fetus', which, I realised she was 21 weeks, but at, she was my baby and I was giving birth to her. And I found that really upsetting and offensive.
The sonographers at her local hospital scanned her baby and spoke to each other about what they...
The sonographers at her local hospital scanned her baby and spoke to each other about what they...
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So they kept talking about ventricles, and at that point I didn't have any idea what they were talking about. And kept talking about dark areas on the scan, and obviously with being the first pregnancy I didn't know what they were looking at, what shades of, you know, light and darkness were good and bad, what a normal one would look like. And that was the bit that we sort of found difficult to understand, because we had no idea, and just difficult to try and get your own head round it, what, what the problem was.
So they basically finished the scan, and we were taken through into a room for the consultant to come in and see us to see what next steps would need to be taken. He came in. I just didn't know how to feel at that point because it was just so up in the air as to what the problem was. And they brought some leaflets in on spina bifida, but then they decided not to give them to me because it possibly wasn't spina bifida.
The next course of action they suggested was for us to go to the main diagnostic centre in [city] to have a scan there with one of their consultants who, basically they were saying, 'They, there's better equipment there and things would be able to be possibly detected a little bit better'. So it was a case of how quick could we get in there to see him?
I believe it was the next day that we had the appointment. That was fairly traumatic leading up to that because, you know, with the journey all the way there you're thinking, 'What are they going to tell us now? Are they going to be able to tell us anything? And how bad, if it is bad news, is this going to be?'
People were also affected by the atmosphere of the place where they first realised how serious the baby's problems were. Some who were sent to specialist centres for more scans and diagnostic tests felt that staff seemed 'more professional' than in local hospitals - but other people felt quite the opposite and said they preferred being in the local hospital. Some couples who attended specialist centres a long way from home found that travelling to the hospital made them anxious and tense before consultations began.
Almost everyone remembered how the baby's diagnosis had been made in the 'bad news' room (usually equipped with tissues and magazines). One woman referred to it 'as the outcasts' room' and would have appreciated having something useful to read.
Describes the room she and her partner were sent to before they were told the baby's diagnosis...
Describes the room she and her partner were sent to before they were told the baby's diagnosis...
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If, I tell you, if in those rooms they'd had that ARC booklet that they gave me right at the end - so that I could have actually started reading that right at the beginning - that would have made life a lot better. To sit and read Homes and Gardens from '89 while you're trying to pass this time, it's no use, because the only thing that's in your head is, 'What do I do?' And if I'd had any useful material at that point, that would have been good. But there was nothing, it was just old magazines and things like that.
Though some parents valued empathy and sensitivity from health professionals at this time, others liked a matter-of-fact approach, and several men said they valued doctors being 'straight' with them about the baby's problems. Many parents said they understood that health professionals could not make decisions for them or tell them what they should do, but several valued doctors who had helped them think about life with the baby in future, in the context of home and family.
He and his partner appreciated the consultant being direct and open with them about the baby's...
He and his partner appreciated the consultant being direct and open with them about the baby's...
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So the specialist we spoke to he said, 'Well so you, I'm going to give it to you straight'. And I said, 'Well that's all you can do because, there's no point in trying to dress it up, just give us the information, give it, what you think'. So he gave us the, the prognosis for our baby girl -because we'd found out that she was a girl by then - and the, you know, it was a very strong possibility, or very strong likelihood that she would make it through to the end of the pregnancy. So all the time she was inside then it was fine.
And then it started to get into 'Well assuming she survives the birth, then she will need an operation very quickly to try and repair some of the damage or some of the abnormalities. And assuming she make it through that first operation, then within the next 6 months or so she will need another operation, and assuming she makes it through that...' and it just when on from there.
And they said it's very likely that she will spend the first X amount of time of her life in and out of hospital if not in hospital, and assuming she gets through all of that, then by the time she's in her teenage years she will need a heart transplant.
So [sighs] that's the information we were given, now they, they said, 'Do you want some time to talk about it?'. And yes, yes we did, so we, we went along to one of those rooms that you see on Casualty, you know, the [laughs]...
Sad rooms?
Yeah we're in the, 'Lets take you in here, do you want a cup of coffee? Do you want this? Do you want that?'. And I think before we even talked, both of us knew what our decision was going to be, because, we didn't want to inflict that on her, or us, or our little boy.
Last reviewed July 2017.
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