Interview AN16
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Her views about screening have changed. She has heard that the baby's anencephaly in her first pregnancy could have been detected earlier, at 12 weeks. She would have preferred earlier diagnosis.
Her views about screening have changed. She has heard that the baby's anencephaly in her first pregnancy could have been detected earlier, at 12 weeks. She would have preferred earlier diagnosis.
And how has it affected your feelings about screening now that you're pregnant again? Did you do anything differently or . . . ?
Yeah I feel that, you know, obviously it's opened my eyes about the triple test. I had the triple test. I'm not so closed minded about that amniocentesis or anything like that, or anything that they can do during pregnancy to find out, you know.
Obviously it would worry me. There would always be a worry in the back of my mind if I had to go down that road whether it would harm my chances of this pregnancy lasting, but it wouldn't close my mind off to it, because it means that, it makes me more aware and more in control if I know than if I don't know. Because if it, the not knowing is the thing that hurts more than, you know, the being in control.
Finding out that, you know, talking to the person, the head radiologist in [city] who dealt with neural tube problems, he said that it could have been picked up from 12 weeks, at the dating scan, if it was being looked for. Now that, you know, you kind of think, 'Well, 12 weeks, that's, okay, that's early, but if I'd known at 12 weeks then I wouldn't have had to go through 8 weeks of not knowing and then have the heartbreak of it at 20 weeks'.
And, you know, if you were informed earlier, then there's a lot more decisions that you'd be able to make then than having to wait all that time of not knowing and wondering, and all these different questions that you have to ask and things like that.
Communication became difficult and hostile during the 12-week scan in her second pregnancy. They discovered the baby had died.
Communication became difficult and hostile during the 12-week scan in her second pregnancy. They discovered the baby had died.
The senior member of staff walked in, didn't ask us any questions, how far along we were, any kind of past history, or anything like this, didn't even look at the notes, put the scanner on and kind of after scanning around for a bit, took the scanner off and started saying, 'Well, why have you come this early?'
And it was like, 'Well, what do you mean, why have we come this early?' And she said, 'Well, why have you come this early?' And, as I say, 'Well, because you sent us a, the date through to come, you know. We're meant to be, you know, you're meant to, dating scan between 10 and 12 weeks. That's why you sent us the scan.
And our midwife spoke to someone in the ultrasonography department, and they said that they wanted us, because of our past history, because we had an anencephaly baby, you wanted to scan us at 10 weeks just to, so that it gave you more time to prepare to then do another scan at 16 weeks, which is the original plan'.
And she said, 'Oh, well, I can't make out the baby. You're going to have to go and - we're going to have to do an internal scan'. And I said, 'That's fine'. And she turned on me as well and said that, 'Did I . . . ?' I said, 'All I want you to do is to tell me if my baby is healthy and normal'. And she then turned on me and said, 'I can't do that'. And I said, 'You can, you can tell me if my baby is in the right place or it's, you know, you know . . .'.
And she said, 'I can't tell you if your baby has anencephaly'. I said, 'I know you can't tell me if my baby has got anencephaly. I'm not expecting you to tell me that'. I said, 'I understand about the whole situation with anencephaly, and that, you know, I'm not stupid, I do understand about anencephaly and when you can scan for it and all of this'.
And I wasn't expecting them to tell me if my baby had anencephaly until 16 weeks anyway. And she started getting quite aggressive towards me and kind of in her, the way she was talking to me, and I kind of got a bit upset about this and said, 'Look, you know, I want you to do an internal scan, and if you can't see the baby properly I'm happy for you to do that. I'll go out and I'll go to the toilet'.
And my mum wasn't actually in the room at the time because you, they only, the hospital only allow you to have one person in the room with you at the time. And mum obviously saw us coming out crying and assumed the worst. And briefly explained what had happened, went to the toilet, emptied my bladder and went back to go in the room and my mum said that she was coming in with us.
And they said that it was hospital policy not to have more than one person in the room, and mum then turned round and said, 'Well, I'm sorry' she said, 'my daughter feels you're treating her like an idiot'. She said, 'She's not an idiot, she understands probably more about the condition than you do'. And she said, 'We've been through a lot together as a family', she said, 'and I'm coming in the room with you'.
And she said, 'Well, it's not hospital policy'. And mum said, 'I don't care, I'm coming in, and if you don't like it then that's tough luck'. And she then turned it round and said, 'I'm sorry, but we have feelings too. If I have to turn round and tell more than one person in the room that you have a problem with your baby, it's not fair on me. I still have to go home at the end of the day. I have feelings too'.
And my mum said, turned round and said, 'I'm terribly sorry, but your feelings don't count in this situation'. She said, 'I'm coming in to do the scan, you know. If you’ve got a problem with that then get someone senior, more senior than yourself”. And the lady backed down and said, “Okay, well, fine, and come in the room”, even though there were two of them doing the scan as well.
And she then turned into the ultrasonographer’s shoes again and explained that, about the whole kind of internal scan, how it was going to take a bit longer than, you know, perhaps it normally would, and that they scan the ovaries as well just to make sure that there isn’t any problems with the ovaries, like polycystic or anything like that. And once she’d been scanning around for a long time - [husband] was actually watching the screen, which he shouldn’t have been really, but he was kind of just holding my hand and watching the screen. It wasn’t till afterwards that he was kind of telling me this, and he said that he, she kept scanning it and measuring the baby and it was only coming up at 8.4, and then she’d double-check it again and it was 8.4 again and 8.4 again, and it kept coming up 8.4. And, and then she sat us up and said, “I’m really, really sorry. Your baby died at 8.4, and I know that you’re 10 weeks”. And I said, well, you know, I just thought, “Oh, I can’t cope with this, kind of like, you know. You, you can’t all of a sudden be all nice to me and all lovely as pie and, you know, tell me something like that, after having a massive lay in to me about not being able to tell me if my baby’s all right and, and all of this, and”.
The sonographer explained she would be silent at the 20-week scan in the woman's first pregnancy. She felt staff communicated bad news with honesty and sensitivity.
The sonographer explained she would be silent at the 20-week scan in the woman's first pregnancy. She felt staff communicated bad news with honesty and sensitivity.
No I didn't pick up there was anything wrong at all, because obviously they showed the fact that the baby was, the heart beating and everything like that and the baby was there still.
So they'd turned the screen round to you, and turned it back?
Yeah, then turned it back and said, 'Right, we're going to carry on with the scanning process' and, you know, obviously didn't say that, how long they would be because obviously, you know, you can never tell because the baby could be lying the wrong way or - and we knew that from the first scan, because obviously the baby was lying the wrong way and they had to do an internal scan.
So, yeah, so she wasn't scanning for that long and I didn't feel that she was scanning, it didn't feel like that long. She was making me like go from, I had to, I was on my back and then she tilted the, the chair back so I felt like almost I was going to slide off the chair and, you know, kind of almost fall on my head. And she made me lie on my side and, and the other side and I just thought, 'Well, you know, this is, obviously the baby wasn't lying correctly to what she needed to see.'
So, you know, she was just scanning around and then she kind of, she stopped scanning and brought the chair up to a slightly sitting position and said, 'You know, I'm really sorry, [own name], we've found that, that your baby has, is missing part of its skull, but I don't want to say any more. I will go and get the consultant and the midwife to come and have a chat with you and explain it in more detail'.
She didn't say, 'Your baby is not going to live.' She just, she just said obviously that, 'There is a part of your baby's skull that's missing and I've had a good look round and I am 100 per cent sure that it, I am correct, but I will go and get someone to explain what the condition is and basically just talk you through it all'.
Instantly, you know, obviously, mother's instinct is to burst into tears and assume the worst, and my husband was trying to be quite supportive and say, you know, 'Everything's going to be fine, the baby's going to be fine. We're going to be able to sort it out and even if they have to put something like a metal plate or something in the head just to, for when the baby's born, you know, we'll sort it out. It'll be fine", being quite supportive.
And then obviously they said, 'Okay, well, we . . .'. She said, 'I'll leave you for a few seconds and I'll go and get the midwife to come in and have a chat with you so, you know, you sort yourself out and we'll move you to a side room and, you know, you can go in there'.
And obviously understanding that the situation, you know, it's not a nice situation having to say to someone 'You think your pregnancy is completely normal. Well, it's not.' And she was very sensitive in the fact, the way she told us. And I felt that all the rolling around and being tilted back and everything like that was due to the, her trying to doubly make sure that yes, she was 100 per cent - and she was taking a lot of pictures.
So I think in a way that reassured me that she had done her job properly just, instead of, you know, turn around and say, 'This is the problem. Oh, actually I'm wrong'. So she had done everything that she was meant to do correctly and double-checking and making 100 per cent sure that, 'Yes, that was the problem'.
She refused the triple test in her first pregnancy because she did not realise it was for spina...
She refused the triple test in her first pregnancy because she did not realise it was for spina...
And we decided because of our age that the way we understood it was, it was just for Down's syndrome, and because of our age and there was no family history of Down's syndrome that we were happy to not go with the triple test, you know, and just to obviously wait until 20 weeks and have a normal abnormality scan then.
Whereas in fact the triple test does look for neural tube defects?
Yeah, it would have. There were, obviously not until the 20, obviously when we had the condition that we found out that [daughter] had, that we found out that yes, you know, the triple test did do spina bifida and other neural tube problems, which would, yeah it would have been useful to do, or to know and to have done.
Do you think if you'd known that at that stage, that you would have opted to take it. Or might you still have thought, 'Well, we're low risk, we're young'?
No I think I would have done because the way I understood the way the triple test worked, obviously it was a blood test and they sent it off and they looked for the percentage of Down's syndrome in obviously the blood particles and then they went on and did an amniocentesis.
And I said that there were no circumstances I was doing an amniocentesis because I didn't want to risk my pregnancy just from, you know, 'What if?'.
My husband was the other way round, he wanted to know whether the baby was Down's syndrome, but he supported the fact that I felt strongly that I didn't want an amniocentesis so he said, 'Okay, well, you know, because you don't want an amniocentesis, that's fine. We'll just wait and see and, you know, if it is then we'll have, have to go from there really.'
And nobody talked to you about a nuchal fold scan at that stage?
No, no one, no one said anything about nuchal fold problems or anything like that.
So no one, is it, it's not common practice to provide it here?
No, no, they do, they just do the, the normal dating scan at 12 weeks and then the abnormality scan at 20. Yeah, so they, no one really explained until obviously after everything that happened with the first pregnancy, you know, what it actually entailed.
And obviously we understood that the triple test took on the, you know, the spina bifida - well no, we understood that the triple test took on the Down's syndrome side but we didn't understand what the other two things were, and no one really explained it to us.
And I suppose if, you know, if we'd delved deeper into it, yeah, we could have understood it better ourselves, but being quite naive and young and, you know, kind of excited that you'd got this baby and nothing can go wrong with your pregnancy because you're young and everything's on your side, that, you know, you just kind of just move along with it, really.
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At first she did not understand what anencephaly meant and spent the night searching books for information.
At first she did not understand what anencephaly meant and spent the night searching books for information.
Yeah, so went, stumbled into bed and, you know, kind of fell asleep crying in each other's arms, and then I think I woke up about three in the morning and said, 'I can't sleep', you know, obviously because you think it's all a dream. You wake up and you think, 'Oh, no it's not'. There's like a split second where you think it's all a horrible dream and then you wake up and go, 'No, it's not. It's real'.
And well, I said, 'I've got to go downstairs and look at my pregnancy books I'd got and see if there's anything about anencephaly in there'. I got my nursing, the Bailliere's nursing dictionary which has like all the, you know, the terms and everything in it, stumbling across it and couldn't find anything in there that, you know, the breakdown of what it meant.
I suppose because you're just fumbling in the dark really, and being quite tired as well, that you're not really concentrating on what you're doing. And I didn't have the actual proper spelling in front of me. I was just looking at what I thought it was spelt like so, you know, I was kind of not looking for the proper thing.
And then looking through the pregnancy books, there wasn't anything, wasn't anything in there about, you know, our condition that we had. There was spina bifida, Down's syndrome, all congenital heart problems, all the different things that, you know, are obvious things that can go wrong in your pregnancy, but nothing that related to ours.
And then felt 'Oh, I'll look in the back and see if there's any contact numbers that, of people, perhaps that, can help, put some perspective on what was going on'. Nothing kind of sprang out immediately that meant any relevance to me at all or our condition. There was like the Miscarriage Society and Stillborn Society and all of these things were, 'Oh, no, that's nothing to do with us'.
And then obviously the one that did spring out was Antenatal Results and Choices and, but they weren't open I think until about 9 or 10 in the morning, the next morning. So knowing that I had this number, it made us feel a bit better about, you know, because it meant that we could talk to someone and felt that, it was a bit of weight lifted off your chest so you could kind of, it felt, 'Oh, at least I can go back to bed' knowing that, 'Okay, I have to wait until 9, 10 in the morning when they're open' but it meant that, you know, you kind of, you had, there was a bit of light at the end of the tunnel that someone might be able to explain a bit better what was going on.
The consultant was shocked to discover they had not understood their baby's condition and had to find information themselves.
The consultant was shocked to discover they had not understood their baby's condition and had to find information themselves.
We went in there, obviously with a whole sheet of questions to ask him, but we'd actually had a lot of those questions answered anyway by all the people we'd talked to. So we basically went in there with a decision to terminate the pregnancy, and what it would involve and where we'd go from there.
We had actually received the information through from the ARC [Antenatal results and Choices] and ASBAH [Association for Spina Bifida and Hydrocephalus] as well, so we had that and we briefly kind of read over it quickly before we had to go to the hospital.
And obviously we also were a bit, because obviously the way we'd had it explained to us at the hospital we had a bit of a complaint to make to the consultant as well, saying that, 'You kind of sent us home with no information at all and that was wrong.
Because how come, with our own brains I suppose have gone home, looked in the back of a book, got a number out of the back of a book, rung these people up and they have sent us all this information and this is all the information we've got and you couldn't give us anything? And do you not think that you should have this information to hand for, for people, you know, who, who have possibly gone through, going through it or have gone through it?'
And they, I think the consultant was quite shocked. He didn't realise that we had gone home - even though he was sitting in the same room as the midwife when she was writing it down on a bit of paper - he didn't realise that we hadn't, you know, we'd gone home with just this name and that was it. And because then we turned round and said that we were deciding to have the termination, they then brought out the Antenatal Results and Choices termination book, which we'd already got.
But you think, 'Well, that could have been'' It's exactly what they said at the ARC' 'We will send this to you. We know that you don't want to make this decision because we know the decision that you are making is to go full term with your baby, but it's just an option that can be explained to you, and that you can read it and take it in your own context and it's just, it's still open as an option'.
She never thought she would consider termination, but discovering anencephaly meant the baby could not feel anything changed her mind.
She never thought she would consider termination, but discovering anencephaly meant the baby could not feel anything changed her mind.
And were your feelings already beginning to change by this stage?
They were starting to change. It was kind of, I think when they suddenly said that the baby wasn't having any feelings, then obviously explaining it to my mum as well, having like a third person's point of view, and she was saying that, you know, 'Do you still feel that you're making the right decision?'
And basically going over the whole of about how the baby wasn't feeling anything, that was there any point going full term? a) because of the worry emotionally for both of us and b) knowing the fact that, even though unselfishly we were saying that we wanted to carry on with the pregnancy because we wanted to do it for the baby's sake - we didn't care what it was going to do to us, we wanted to do it for the baby - that did it change now? Because obviously we knew the baby wouldn't be able to feel anything that we were doing.
Which did change the perspective immensely, because it meant that we could look at the option of termination now, because at the end of the day it wouldn't be selfish for us to terminate the pregnancy, because we would be doing the best thing for the baby and the best thing for us.
Which at the beginning didn't feel like it was the best option, but then it was suddenly feeling like it was the best option, because if we'd gone full term we then felt that we were being selfish because we were hanging on to this little life and keeping this little life going and putting its body through all of these struggles that it was going to have to go through to go full term, and then putting it through the struggle of the birth and not having an outcome to it.
And finding out that also the maximum I think an anencephaly baby has been alive is, I think it's, I think it was 15 days, but that was on life support so it wasn't actually alive.
They felt relieved after taking the mifepristone tablets, and began to feel ending the pregnancy would be a positive experience.
They felt relieved after taking the mifepristone tablets, and began to feel ending the pregnancy would be a positive experience.
So we talked about all of that and prepared ourselves for it all and, I don't know, it didn't become, I think once we'd made, I think it was the Tuesday evening, when we had made the decision that this is what we were going to do, it didn't become emotional any more.
It was suddenly, a huge weight had been lifted off our chests, we could, so I think that was the first proper night's sleep that we got apart from obviously the one where we didn't sleep very well at all because we were so emotional about everything. And, you know, had a really good night's sleep, and it was a huge weight being lifted off our chests because we had decided that this is what we were going to do, and it was just finding out when it was going to happen.
And, I don't know, we started enjoying, because we'd made a decision that wasn't emotional any more and we were looking forward to seeing our baby, and it also turned into the fact that it wasn't us losing a baby, it was the fact that we were, in a way we were going to see our baby before anyone else could ever see their baby.
We had some friends that were pregnant at the same time and they were due the same time, I think they were due a week or so before us, and it was almost like nice to think that we were going to see our baby before they were going to see theirs. They still had to wait another 20 weeks, and we could see our baby straight away. Because it's always in the back of your mind wondering what your baby looks like and it was, and it was nice to think that it wasn't anything negative now, it was something positive to look forward to.
So obviously going away, planning names, choosing an outfit and basically looking forward to the Saturday rather than dreading it, so it became a positive thing to do. Yeah, so it meant that we could enjoy the next couple of days I suppose as a family, because it meant that, you know, there was three of us kind of being all together really, and enjoy that time while you had it together.
It was a bit hard still, because obviously I'd taken this progesterone tablet to stop it, stop the progesterone. It was always in the back of my mind about whether the baby was alive still, because from the time they told us that we had the anencephaly to the time where we'd actually made, taken the tablet, she hadn't actually moved a lot. She was, she hadn't mo-, I hadn't felt her move, and I thought, well, as soon as I'd taken the tablet that she'd died.
And then when we went in on the Saturday I asked them just to confirm whether she had passed away or whether she was still alive, and they did a Doppler scan and they said no, she was still alive, her heart was still beating, which was nice again because it kind of gave us something up in the day to keep us up, you know, kind of feeling like we were still kind of looking forward to giving birth to this baby.
Deciding whether to continue or end a pregnancy can place great strain on relationships. It has to be a joint decision.
Deciding whether to continue or end a pregnancy can place great strain on relationships. It has to be a joint decision.
I think it's opened my eyes to the fact that it isn't just me to think about, that it is just, that we are a partnership together, and how is it going to affect our lives? And I think instead of me just jumping in with both feet and saying, 'I'm not getting rid of it', I have to take into consideration my husband's feelings as well.
As with [daughter's] decision, you know, I think still part of me wishes that I'd carried on to full term and I, you know, I'd always, 'What if?' There is always a, 'What if?', so if I did go full term with [daughter].
But then I know deep down that that wasn't the right decision to make, but then you always do question your decisions that you make afterwards. But I think it's, I think it's opened my eyes that it's not just my decision at the end of the day, it's not just going to affect me.
It doesn't matter how much I feel I can cope with it, because I can cope with it, knowing that I've looked after children with disabilities, it's whether [husband] can cope with it. And if I went ahead and said, 'Yes, it's got Down syndrome. I'm keeping it', would it mean me losing my husband because of it? And would it be worth me putting, you know, my marriage through something like that, just for the sake of, you know?
I know, it's a baby and it's still a living human, you know, it's a human being, but when it comes to something like that, a decision like that, when you find, you know, your husband is your soulmate and he's your best friend and you want to, you know, you've been through so much together, that would you put everything like that in jeopardy just for this little thing, that everything, you know, you may bring this baby up to be perfectly, you know, have a normal healthy happy life but - apart from its disability - but then there may not be a father in the picture, and is that the right thing for the baby?
And I think it would, I think it's opened my eyes to that fact, that it isn't just my decision at the end of the day. It's his decision as well. And if, say - obviously this pregnancy we haven't got a defect that we know of - but with future pregnancies how is it going to affect this baby, you know, as a sibling? How difficult is it going to make it for this baby to grow up knowing that all the attention is going on the next one because they have got this problem?