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Interview AN32

Age at interview: 35
Brief Outline: Problems detected in first pregnancy at routine 12 week dating scan - confirmed as Edward's syndrome by CVS. Couple decided to end the pregnancy. Now pregnant again.
Background: Children' first pregnancy ended at 15 weeks, Occupation' Florist, Marital status' Living with partner.

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She had no idea the 12-week dating scan could detect problems, and felt completely unprepared for...

She had no idea the 12-week dating scan could detect problems, and felt completely unprepared for...

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As far as I can remember we had no discussion at all, but I personally felt that I wouldn't go for any screening barring a scan. I had no blood tests or - yeah, but we hadn't entered any discussion. It hadn't entered our minds that anything would be wrong.

In thinking you'd go for a scan but not for other screening, were you kind of separating out the purpose of a scan?

Yeah, totally na've about it, about the whole process. As far as I was concerned going for a scan was just to get a photograph and just to check the number of weeks. I wasn't aware at all that it was looking, intent on looking for any problems. I wasn't made aware of that, and I just wasn't aware of it.

Is that a common perception, do you think, when you talk to friends?

I think so, I think most people just happily go along to their first 12 week scan just thinking it's a purely a dating scan. It's called a dating scan and you don't enter into any discussion beforehand about what they are actually looking for, and what can be picked up by a scan.

 

Her 12-week dating scan had to be repeated twice, and she was told the baby's nuchal translucency was high

Her 12-week dating scan had to be repeated twice, and she was told the baby's nuchal translucency was high

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We went along together. We were just quite happy, just joking and laughing, saying, 'Oh, hopefully this is, you know, not - we're not going to have many visits to the hospital', because neither of us really liked hospitals. And we got there and were waiting in the waiting room, went for the scan and the first thing I noticed was just it just wasn't a very pleasant place.

It sounds ridiculous, but the wallpaper was hanging off and the curtains were, you know - it was not a, it didn't feel particularly pleasant. We were scanned by a, I think she was a student scanner who immediately said, 'I've got to go and get someone else.' Or she told us that she was a student and did we mind? And we said no. And then she immediately said, 'Oh, I've got to go and get somebody else' and we presumed it was to do with her being a student. 

And then a man came in and scanned us, and said, 'I can't see properly,' and I think at that point I said, 'Is there anything wrong?' And he said, 'Oh, put it this way. It's got an arm and two legs - it's got two arms, two legs and a head.' And I thought, 'Oh, that's a bit of a strange thing to say.' And then he said, 'Oh, you need to go back out into the waiting room because I need to check further, and you need to go and drink some more water.'

So we went back out into the waiting room and I'd already drunk lots and lots of water, so I was a bit concerned, but not overly concerned And we went and sat in the waiting room for 20 minutes or so. It must have been while they were gathering people. You know, they must have spotted something and it was while they were gathering people together and making appointments with consultants and things for me. But I was just, we were just stranded in the waiting room, drinking water.

And what was going through your head, how far did you think, 'This is normal' or think, 'This is something wrong'?

I wasn't totally thinking, 'There is something wrong here', because I hadn't, it was the first scan I'd ever been for, so I wasn't, I wasn't totally aware that there was something wrong. Now, of course, I would be, and talking to friends and family, you know, they've all been through similar scanning processes with their babies and I just, I didn't realise how far something had gone wrong, really.

Had he talked to you much during the first session that you had with him?

During the scan?

Yeah.

No, no. Not at all. He was quite, he was very, very quiet.

And had he ?

But I thought that was normal, so yeah.

He hadn't said that he was going to be quiet?

No, he hadn't said anything, no. I wasn't aware of how scans work, and no, I just thought, I did, I had a slight inkling something may be wrong, but in all honesty I thought it was how a normal scan would proceed.

And what happened when they called you back?

Again, I think it was him doing the scanning, but I was introduced to a midwife - no, a Sister - who was there, and there was a few other people in the room. And then I think they immediately said then, 'We think there's something wrong with the baby.' 

It wasn't him who, it wasn't the scanner who said anything at all. It was the Sister, who was quite comforting, came up to the bed and held my hand and said, 'We think there's something wrong.' And then tried to explain a little bit about the nuchal fold, because what they’d seen was quite a large swelling on the back of the neck. And she said, “Do you know what this means?”  And I said, “Oh” - I immediately said, “Oh, it’s Down’s Syndrome”. And that - because I had read a little bit about it - and she said, “Well, that’s not necessarily so. It could be an indication of any number of problems, [um] but there is something wrong with your baby.”  And at that point it just all fell to bits, really.
 

They decided against blood tests in the current pregnancy and relied only on scans. This time...

They decided against blood tests in the current pregnancy and relied only on scans. This time...

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And by that stage I'd, I thought it was past the CVS stage but we were getting into discussions about blood tests and whether I would have blood tests or not. And I said, 'Well, I think I need to talk to somebody about blood tests.' And me and my partner had spoken about blood tests, and we were both unsure about what the position, how to go about it and how we both felt.  

So this midwife, who works very closely with the consultant, took us into a side-room and we talked about the blood tests, and the major thing that came out of it was that my previous history would go down and would be counted. They couldn't do blood tests without using my previous history, which I wasn't happy about. 

And the other thing that came out was that if we had blood tests we were, in fact, making a choice to have amniocentesis because the results would come back high risk, more likely than not, because of my previous history. So we weren't deciding to have blood tests or not, really. We were deciding to have amnio. And as we'd already decided not to have CVS we both felt that we didn't want to have the pain and the stress of going, having amnio. So, really, we've just relied on scans throughout this pregnancy.

Do you feel comfortable with that decision?

Totally, yeah, totally. I think sometimes it's just assumed that you'll have all these blood tests, and you'll have this and you'll have the other, and I don't think there should be any assumption. I think that you should be made aware that it is totally, it is a choice. You don't have to have it. 

There are so many things that you have to do in pregnancy, like blood pressure and urine samples, and you just think the blood test is just another one of those things that you have to do, and it's not necessarily true. I mean, certainly with me, having, just talked through the process of having the screening tests, I didn't realise that it would be, I was making a choice to have amnio, basically. Because I knew it would come back high risk and I didn't want that stress on myself, really or the baby. You know, I just didn't want that stress.

 

She was unhappy with the information given at her first hospital, but things improved when she...

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She was unhappy with the information given at her first hospital, but things improved when she...

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But I mean, the whole of the, I mean that was just the first step of very bad treatment by the hospital. But looking back now, to have been sent away in that state without any - we had no knowledge, we had no-one we could ring. 

I mean we'd, we're a strong, together couple and had, we had each other, but the thought of someone going through that on their own and - oh, it was just dreadful, really. The fact that a consultant couldn't be found so that we could see someone that day, I think was wrong. 

I think that we should have been able to see someone who would have been able to answer a few questions for us. I don't think we should have been left in the state in which we were.

And then the next morning, you went - was it the morning that you went back or the afternoon?

Yeah, I went into work in the morning. I've got a, I work with a great team and I just told them that something had gone wrong, and they were all fantastic and throughout the whole 3 weeks, the whole process, they were just brilliant, brilliant support. So I continued to go into work. And then I think it was in the afternoon that we went and saw the consultant. My partner came and picked me up and we went to the hospital to see the consultant.

Well, we saw the consultant and she said that the baby was not just swollen at the back of the neck, it was swollen all over. It was very unlikely it would make it to term, and she was surprised it had made it so far. And then she got a text-book from the wall, from the bookshelf, and showed us on a graph, 'Oh, your, the chances of the baby's survival are about here on this graph, approximately, I don't really know.' 

It was just awful. And then she said, 'Well, we've made an appointment for you to go to a specialist hospital to go and have something called CVS,' which I hadn't heard of at all, at that point. But, to be honest, if I'd been on my own I wouldn't have gone for that. I would have just ended, ended it there and then, but my partner said that no, we needed to find out what it was, and what the problem was, so.

What was his thinking, do you think, in wanting to know that extra information?

To gather as much information as possible, I think, so that then we could make an informed decision.

You felt you had enough information by then?

I'd had enough of everything. I'd, I really could have acted on what that consultant said and, in retrospect, it would have been totally the wrong thing to do.

It would have been the wrong thing to do?

Oh, of course, yes, from what we were told the following day. We were told by the specialist professor, we were told that there was only a 1 in 10 chance of the baby having a chromosome abnormality. So we went from something that I could have, we could acted on the baby not going to term and was very, very ill to the next day knowing that there was only a 1 in 10 chance.

On the basis of the scan?

On the basis of his scanning, his specialist scanning.

Right.

And he did a nuchal, a proper nuchal fold scan and gave us immediate results.

And that said 1 in 10?

Yes, 1 in 10.

Or 9 in 10?

Yes, yes.

This question of risk information, and how it’s presented in this graph, I mean did it make any sense to you the graph that she was showing you?

No, it just looked, it looked unprofessional. I would rather have not, it made no sense to me whatsoever and I’d rather have not known anything. I’d still rather her have said, “I’m sorry, we’re going to refer you to a specialist and he will give you all the information,” than to give us a haphazard graph, “Oh, you may be somewhere on this.”

And when you were then told it was 1 in 10, did that have any more meaning for you?

Oh yeah, I mean that gave us a chance, there was a glimmer of hope there. You know, there was only a 1 in 10 chance that - I mean, we knew that there would, there was something wrong with the baby and that it could possibly mean a heart defect, but we just leapt on that 1 in 10 chance and said, “Well, you know, there is an only 1 in, there’s only a 1 in 10 chance that it could be a chromosome abnormality.” I mean, of course, I knew that there was something wrong, but there was a glimmer of hope there, whereas the day before there was nothing. You know, as far as I was concerned the baby was already dead, so.

 

They felt very well looked after at the specialist hospital they were referred to, and her...

They felt very well looked after at the specialist hospital they were referred to, and her...

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The whole experience of going to the larger hospital was just incredible, the difference. And I think when we arrived there we realised the treatment that we'd been getting at the local hospital in comparison was just beyond belief, really. It was clean, the people knew our names, they were expecting us. 

The Matron there was fantastic, sent, put us into a private room and gave us a cup of tea, explained what was going to happen with the CVS. It was a whole different world from where we'd been the day before. I felt very looked after, emotionally and medically. 

And then we went into the room to have the scan and the Professor, who was a Professor of Fetal Medicine, came in, introduced himself, actually shook my partner by his hand and called him his name for the first time, which was very, very important, because he hadn't really been acknowledged at the local hospital. He then sat us down and explained what he was going to do and about the CVS, even though, he said, 'You've already had some explanation, I'd like to explain what I'm going to do.' And it was just a whole different world, really.

 

Once they knew the baby had Edwards' syndrome, they felt termination was inevitable, but needed...

Once they knew the baby had Edwards' syndrome, they felt termination was inevitable, but needed...

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It was a relief to have the diagnosis, so that we knew what we were facing. And after, just after all the medical fuss and we just, we had a result. And then we discussed about Edwards' Syndrome and there really was no choice at that point. We just said, 'Well, the condition is incompatible with life, so therefore we've got to end the life,' and that was that, really.  

We didn't, we were totally together on our decision, which I can understand if two, if people, one person wants one thing and another person wants another, it must be just awful. But we'd, by that stage, were totally together in our decision.

And this was a position you'd never really contemplated yourselves being in?

No, never, never. We're just happy-go-lucky people and we'd decided, 'Right, now is the time to have a baby' and we just thought everything would be fine.

So what happened when you went back to the local hospital?

We went back and we were, again, went through the waiting room with, the 12 week scan waiting room and then we were shown into a cubby-hole, it seemed like, with the books, the bookcase on the wall with all books about fetal abnormalities which you see everywhere. And we sat there and we had to wait for the consultant to come down. Then she came down, and at that point said that I would definitely have to go through labour to have a termination, and just waited for us to make our decision.

Has anybody ever talked to you subsequently about whether you did have to go through labour?

No, no but I have found out since that at 15 weeks I probably didn't have to. I was made aware, I mean initially I thought that you could probably have a termination up to 20 weeks under a general anaesthetic. I had no knowledge about terminations, really, but ARC [Antenatal Results and Choices] had spoken to me about the possibility that I would have to go through labour, and for me to think about whether I wanted to see the baby or not. So I had, I was slightly aware of it before I went to see the consultant.

And did she give you much in the way of detail of what would be involved in termination?

No.

What more should she have told you that you didn't get from her?

Exactly how the process would work. We were just told that we had to go in one day and take a tablet, then go away and come back again. That's was all she said and there was no discussion about whether we wanted to see the baby, how long the whole thing might take. 

It was basically just, 'Hurry up, make your, make your mind up, sort of thing, and tell me when you want to come in.' There was a miscarriage specialist there, miscarriage nurse there, who was great. But again, she was specialised in miscarriage and not termination after results that I'd been given.  

And I think really there should be a person, a counsellor or somebody at some stage from every local hospital to give you support, who's got knowledge about people who've been diagnosed with carrying a child with, who's got a chromosome abnormality.

 

The nurses and one of the doctors were very supportive during the termination, but other staff...

The nurses and one of the doctors were very supportive during the termination, but other staff...

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I went back to work the following day, and then the following day we went and checked in for the termination. And I was given a pessary, and nothing happened for hours and hours and hours, it seemed. And we were given, I was given more pessaries, and still nothing was happening until the evening. And then my waters - I had quite a lot of pain, which I was given good pain relief for. 

They gave me a drip into my hand for morphine. And then my waters broke and everything seemed to stop. And then it just seemed just to go on for hours and hours and hours. And then various doctors and consultants would come down and check me out and say, 'Oh, nothing's happening.' And then I went on to a drip to help speed it up and it was going up by half a - I don't know how they measured - but it was going up by half every hour. 

And then at the end of the day, it was about 10 or 11 o'clock at night, and a lovely doctor came down and just said, 'Oh, this is ridiculous. Turn it right up. You might feel a lot more pain, but just use the morphine. You just can't carry on like this, indefinitely.' So in a way that was great - just turned it up and I didn't feel any more pain. 

Then he came back down again at midnight - oh, what had happened in between? Some - yes, I'd been examined quite a few times and I remember one doctor saying, 'Oh yes, I can feel the products of conception,' which was awful. Oh, that really sticks in my mind.  

Oh no, 'I can feel the products,' that's what she said. And then this lovely doctor came back down again and he just said, you know, again he was one of the people that acknowledged my partner, and then he said, 'Right, we're going to just pull the baby out' so, because it was half-way there, so that's what he did.

So, a bit mixed, the kind of care you had?

Mixed care.

Some sympathetic, some not so sympathetic?

Yes. A midwife was quite, some of them were, some of the nurses were lovely but midwives tended to be more dismissive. One midwife came - I'm not sure if they were aware why I was having a termination - but I felt one was quite, it felt like she was frowning at me. 

And she came down with the gas and air and said, 'Oh, don't you know how to use it?' And I said, 'Well, no, you know, I haven't got that far in my ante-natal.' And she showed us and was very brusque and, you know, left quite quickly. But then the nurses were good. It was a mixture, it was a complete mixture.

 

Seeing the baby reassured her that the diagnosis of Edwards' syndrome was correct. Her husband...

Seeing the baby reassured her that the diagnosis of Edwards' syndrome was correct. Her husband...

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My partner chose not to see the baby, so he just went off and telephoned my Dad. And they took the baby away and then brought it back in like an egg-box. Oh, just peace, I think, to see that - oh, because when you look at scans you're not quite sure, it's not, you know - but when I saw the baby you could definitely tell that it wasn't well, that it was swollen around its neck, but had beautiful eyes and it was just lovely to see it. It was a final thing for me to do - well, one of the final things to do.

Did you know before the birth what sex it was going to be?

No.

And you know now?

I think so. I'm not 100% sure.

Right. What would you say to other women about whether or not to look at the baby or to have a photograph?

It's a very personal decision, very, very personal. I think it depends, at my stage of pregnancy it was very early, so you've got to be aware that it's not going to look like a baby. Well, it does look like a baby but it's very different. It's just a very personal choice but for me it was the right one to do. 

I'd carried that little baby inside me for nearly 4 months and that was my hopes and dreams in that child. And it was knowing, I saw for myself that it wasn't well, so that was positive, really. It wasn't something that I could think about in later days and think, 'Oh, you know, was it really? Were those results right?'  

It was reassuring yourself that it was true?

Mmm.

Has your partner ever regretted not seeing the baby?

Not that he's told me.

Has he seen the photograph?

No. We've got photographs and if he wants to, then he will look at the photos.

 

The consultant doing the 12-week scan in her current pregnancy recognised her anxiety and...

The consultant doing the 12-week scan in her current pregnancy recognised her anxiety and...

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And the 12 week scan that you did eventually have with this consultant who does her own scans?

Uh-huh.

How was that?

That was fine. I initially, was very, very nervous, almost to the stage of panic attack nervous. Obviously my partner was with me. When we went in to have the scan I told her what had happened and said that I was very, very concerned and I didn't like having scans and, obviously, about my previous experience, and she was fantastic. 

She, as soon as she started the scan she made me feel comfortable, and as soon as she started she just said, 'Oh, the baby's beautiful' so I'd, although she didn't say everything's fine, she immediately acknowledged that the baby was a baby and was beautiful, so different treatment altogether.

Beautiful, whatever happened.

Yes, yeah.

And was she able to reassure you at that point?

Yes.

How did she sort of couch that reassurance, because obviously she can't be '?

She just said, 'I can't say 100% that everything's fine,' She said, 'But as far as, I've got no worries at all about this baby.' So she made me, she just spoke to me like a human, so she made me aware that she can't, she couldn't say 100% that everything was fine, but as far as she was aware she had no worries at all about the baby.

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