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She was starting to relax when she went for the 20-week scan with her mother but then the sonographer saw signs of Edwards' syndrome.
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Mother: So it was just, we were coming up to the 20-week scan and I was just getting more relaxed, just actually starting to look at maybe baby catalogues or, you know, going down the baby aisle at the shops, which I'd always avoided. Went off for the 20-week scan, which you didn't, you weren't there, were you, for the first scan?
Father: No, no.
Mother: So obviously quite relaxed. [Husband] couldn't make it. Fine, go on my own. We, I was with my mum, and they scanned and found choroid plexus cysts on the brain, which is just a mark, it's a marker on the brain, it's a, what they call a 'soft marker'. It's quite common, perhaps 1 in 10 they find these, and within a few weeks they disappear. But it is a soft marker for Edwards' syndrome.
So I was, they couldn't actually finish the scan then, the baby was moving around too much, so they couldn't scan the heart and the stomach. I went away and came back, and she couldn't get a good picture. So had to come back in a week's time for a scan, which again is quite a common thing I found out. I wasn't unduly worried at all. I had my little leaflet, printed off leaflet about choroid plexus cysts. So it was quite common, this is what happens.
I had an appointment with my consultant 2 days later, and again he said, you know, “Very common - shouldn't worry about it too much, you know, if, the problem is if they find anything else wrong'. So choroid plexus cysts on their own, no problem, but if there's something else wrong, then that's a problem.
Went back a week later for the scan and, you were with me for this one, weren't you? This was on the Friday. And I could see, before she even said anything I could see that there was something wrong with the heart. She brought up a picture of the heart on the screen. And having read, since read my information on Edwards' syndrome, a good 85 per cent have problems with the heart. And you could see, where you should have a picture of 4 chambers, you could really see 2. |
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They feel that their baby would have had no quality of life so they have no doubts about ending the pregnancy.
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Mother: We went back Monday morning to see the specialist, and she said, yes, there was something wrong with the heart, and the head was not the right shape - strawberry-shaped - and she couldn't actually find a stomach on the baby. She couldn't say, she thought probably 80 per cent chance of Edwards'. She couldn't say without a, and our choices were then to have an amniocentesis, or she could arrange for a specialist to see us in [city] for the heart, which we opted for.
And just because there was an appointment free, we got one the next day, went up to the specialist in [city]. And, yes, the heart, there was at least 3 major heart defects, which would have meant an operation at about a few days old, an operation at a few months old, an operation at a few years old, and our baby would never have a healthy normal heart. She would always have problems. And I, there and then we didn't... well... we had the decision then to terminate.
Father: Yes.
Mother: We didn't actually discuss it I have to say. We didn't, we didn't discuss it, did we? I don't know how we...
Father: Well, we, they told us everything, showed us, he drew diagrams of what he thought was going on, and this... and he explained what would happen, you know. And so really the, it was so, he was very good, wasn't he?
Mother: Mmm.
Father: He explained it so well, that it was pretty obvious that the child wouldn't have a very good life.
Mother: Quality of life.
Father: Quality of life.
Mother: We didn't sit and discuss it. We were, we were sort of shown into a room with a midwife, and it was then said, sort of said, you know, “You should decide the future from now on, you could have an amniocentesis”. He again strongly suspected Edwards' syndrome. In which case Edwards' syndrome babies don't survive anyway.
Father: No.
Mother: They're non-compatible with life. Or we could, you know, carry on with the pregnancy, even if it did have Edwards' syndrome. Or if it was just the heart defects, carry on and have operations. But we didn't, I mean we just sort of, to us it was obvious to terminate I think. You know, we didn't need to discuss it with each other. We both felt...
Father: Yes.
Mother: The baby wouldn't have had a quality of life. At best it wouldn't have...
Father: My feeling was that it was cruel. It would have been more cruel to, for the baby to go full term and then die naturally, or suffer and die than it was to terminate. And that's how I looked at it, and still do. |
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She was shocked at what she read in the ARC booklet but was glad to know in advance what was going to happen.
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The specialist in [city] 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 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 the, 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. |
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She had the impression that she should see her baby but found she was shocked by aspects of her appearance and is still unsure whether it was the right thing for her.
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I re-, my initial reaction was absolutely no way. Then, I think because the professionals advised it - they perhaps know best - and I do see the point of view and I think, I don't think I could have won on that one to be honest. If I hadn't have done it, I maybe would have always regretted it.
But she actually had her, all her facial features were dismorphic. She had no ears and an enlarged head. So in the two days I decided, “Yes, I would quite like to hold my baby” I had a little picture in my mind of a tiny little baby, perfect little baby, which she didn't look like.
And although I've read lots of letters since that people look through the deformities and see a pretty baby, I didn't. So that was quite shocking. So although I did hold her and see her, it was probably something I would have had to do, I'd have had to do, that I couldn't have not done it, but I'm not saying it actually did a lot for me. I can't, I'm not sure, I can't decide.
It didn't at first but then I've since had the ARC (Antenatal Results and Choices) newsletter and I read all the stories, and everybody else was opposite to me but one [laughs]. Eventually one letter came through from a woman who said, “I've read all these letters and I didn't feel like that”. So, no it doesn't worry me now. But, and it didn't worry me a great deal at the time, just a little nagging doubt maybe that, “Am I different to everyone else, you know, were my feelings wrong?” But no, I generally feel that I did the right thing. |
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She was disappointed to be assigned a midwife who didn't seem to know how to reassure or care for her.
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Mother: And then the contractions started getting worse. I can remember telling the midwife that they hurt [laughs]. She was very - I didn't like that particular midwife. Obviously they were changing shifts. She was a young girl and I really, can't say I disliked her, but she hardly spoke to me, she wasn't reassuring, she just came in very quietly and got on with what she did. It wasn't necessarily anyone's fault, it was just the midwife assigned to me, I didn't particularly like her. She was very distant and she kept coming in and, oh, at one point I said, you know, “Can you, I need someone...”. I wanted someone here to tell me what's going to happen. It doesn't have to be a midwife, it could have been any woman that's given birth. I just wanted someone there to say that what I was going through was normal. She said, “Well, shall I examine you?” And I said, “Yes, please”. And she'd run out of gloves in the room, went off to get gloves. Every time they went off they disappeared for hours, didn't they? They were obviously very busy. And at which time the baby was born. So
Father: That's right. It was that quick really.
Mother: And she came back and the baby was born. I don't know, at the time it didn't seem, I was more, I was getting a bit worried just before that because I didn't know what was happening. The contractions were coming quite quickly, they were coming quite quickly and painful. So I knew something maybe was happening. I didn't want to be, I wanted someone there maybe, as I said, I wanted a woman there who'd given birth, just to reassure me that it, everything was okay.
Then the baby was born and this particular midwife spent hours with this baby which annoyed me. Did it annoy you?
Father: No, not really - didn't annoy me, no.
Mother: She didn't seem to take much notice of me. I'm not saying --
Father: No, no, they didn't, that's right, yes.
Mother: She wasn't a friendly person. She wasn't a “How are you then, [name]?” She'd come in and not said, I'm not sure that she even talked, did she?
Father: Not much, no.
Mother: And then when the baby was born they sort of, they have a little blanket and they dress the baby in a little bonnet and wrap it in a blanket for you and they take photos. And they took handprints and footprints on a little card. And she must have taken a good hour doing all of this. |
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She was given a booklet about how the termination process would happen which told her things she didn't know before.
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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. |
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He feels that men should be strong and describes how he helped his wife in practical ways.
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Father: I'm a bit old-fashioned I suppose, they've got to be strong. They've got to be strong and they've got to take more responsibilities for everyday decisions. Because a lot of men don't.
Mother: You sort of took over.
Father: Yeah, take over basically, so [my wife] can concentrate on what she's got to concentrate on, especially if like there's a termination coming up. That's, you've got to just be there.
And, you know the silly little decisions like 'What are we going to have for dinner?' You know, if you're emotionally involved with something like that, a termination, who cares about what you're going to have for dinner? But you've got to eat, so why doesn't the man take simple little things like that over - those sort of what you take-for-granted decisions. |
