Antenatal Screening

How did that go? Did you both go?

Yes, we both went. It was very, very straightforward, you know, and a fantastic experience. And we actually managed to just, to see a really good image on the screen, which looked like a baby! albeit absolutely tiny.

And it, I think that we did feel, it was very quick. That was sort of one thing that I think we hadn't quite expected how quickly it was done. And we realised that we were just one of thousands, whereas, you know, when you're actually experiencing it you're the only people in the world who are looking at a fetus on the screen of your baby. 

But I think that was something I remember from it. It was very matter-of-fact from their point of view, but it was incredibly significant for us. But there was a sense of sort of relief when it was there. I suppose for me personally to see this baby was just confirmation that it was there, given I hadn't really had any symptoms, and there was no denying its existence and it was actual visual proof that there was a child there.

What about your husband's feelings?

Yeah, very similar I think. Yeah, he very much enjoyed it and was excited and, you know, we got a print-off of the scan and got copies for the grandparents and that sort of thing.

Did the person doing the scan communicate much with you during it?

No she didn't. I mean I'm often sort of curious to know who these people are and what, you know, whether this is all they do all day every day or whether it's a broader part of their, part of a broader job and things and she didn't actually seem particularly interested in engaging in conversation. It did feel very much of, 'Yes, you're the next on my list of people to scan'.  

I did note that there were sort of no introductions, for instance she didn't sort of say, 'I'm . . .' and give her name. There was not very much rapport building, I didn't feel. 

I didn't particularly feel I needed that personally, but it did cross my mind at the time that had I been feeling more anxious than I was, or perhaps if I'd been on my own, it didn't feel the most comforting of environments.
 

And just thinking back to that first scan, what was that experience like, and how was the news communicated to you?

It was a terrible shock, I think, because it was my first pregnancy. I was then very inexperienced. I hadn't even heard of, I'd heard of miscarriage and the sort of regular things that go wrong with sort of early pregnancy. So when the lady who was scanning me asked me if I was sure I was pregnant, I mean I just did not understand what she was saying. 

So I mean I thought I was 14 weeks pregnant. I probably could've understood if she'd said the baby's died or there's something wrong with it. But when she asked me if I was sure I was pregnant I just, you know, I just couldn't comprehend what she was saying. And then she showed me a picture of the womb and there was nothing there. It was, I think I was in shock for about a week, I just sort of couldn't understand sort of what had happened.

Did your husband come with you to the scan?

No, he didn't actually. I mean, we've always been, you know, sort of quite independent, and I actually just went with my sister. I didn't, I suppose that's one of the sort of, it was the sort of first example, I didn't see it was like a sort of massive thing. Even though I was definitely nervous, because I thought, you know, it might have died or something, you know. It might have gone wrong. 

But I definitely wasn't prepared for what had happened to have happened. And then I called him and, you know, he came along and was then with me until I went home. But I think it was just the emptiness of the whole experience afterwards. You feel sort of numb with kind of disappointment and upset. 

And I think because I feel so dreadful in early pregnancy that it completely stops my life, so you feel like you've had - not that it's been wasted - but you know, I can't do anything, I'm just constantly sick, you know, just feel terrible, and you just feel so let down. You just think, 'I've gone through all that for nothing, and I've got to go through it all again if I want to get pregnant again'. So it feels like quite an upheaval to get over that sort of, those feelings.
 

Mother' because she was a while, and she didn't say anything and she was looking. And then I knew that this isn't right. And then she did an internal scan and she said - she first, when she couldn't, she said, "Oh, I can't, I'm, I'm" - I can't remember how she phrased it but she didn't say in an alarmed way, "Ooh, there's a problem," but she did say, "Oh, I'm having trouble. Would it be OK for me to do an internal scan?" 

 And then she said when she did that, 'You know, I'm really sorry, but there isn't a heart beat." And also she offered me a picture anyway. So she explained when she thought, what size the fetus was and so how old it was when it had died, and offered me a photo and said, you know, she gave me a bit of information. 

And then after that I saw a GP as well, but that was obviously partly because there was going to be a procedure involved to, you know, I went into hospital the next day. But she, the GP then explained what the, and they were very, I think it was dealt with in a very sensitive way then. It was very supportive.

I think it was handled as sensitively and as kindly as it could have been, I think. It's more that before I had the scan, knowing what the chance, knowing that information about what the chance of miscarriage was. And that's a difficult, I can see how for a GP that's hard, if I go and I say, 'I've found I'm pregnant,' and to say "Well, you know, this is, you'll have a scan then but you must be aware that" - I know that's really hard and that people - when I've just said that, you know, I was feeling so elated and that it was very sort of mundane, but actually they could've explained why they were being quite mundane about it, I think and just sort of saying, I don't know, I think...

Father' Well, I felt terrible I wasn't there.

Mother' Yeah.

Father' Absolutely awful. I mean, you know, and had to hare sort of, like - I don't know, what is it? Two hundred miles down the motorway, feeling absolutely like ghastly, you know.
 

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.
 

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.

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.
 

Well to me, the twelve-week scan for the miscarried children were - well, they were horrific. And that's not because of the way that they were handled, but just because I, because of what was in my head when, when I actually went in to the scan room. 

I never dared at any time hope. I always had it in my head that it was going to go wrong, and even with the pregnancy that went on to my son, I still, every time I had a scan, I always thought this is the one where they're going to tell me that the baby has died.

How quickly in the first one did you realise something was up? Did she suddenly go quiet or lean forward?

That would be the second miscarriage. Yes they, they do and it must be so difficult for them. I mean, it really must be. Because, I mean, with the second miscarriage you, I didn't think that - oh, I don't know really. I didn't think that it would happen again. Although you're terrified, I didn't think it would happen again. 

But they're, you see them looking, and they always say to you, 'Well, look, we're going to go, if we go quiet don't worry. We're sort of, it's a very detailed thing we're looking for and ' Yeah, and then they just sort of say, 'I'm really sorry, but we can't find a heartbeat.' 

So, yeah, it's pretty horrendous. And I, you would think that I would never go near a scan again, considering the bad news that I've had from them but I think it's just, it's a lot of people's lifeline to know that - well, it's the only way that they can find out.
 

The woman who did the scan was fantastic. I'd never had her before, and obviously when I walked in and saw that it wasn't the doctor that I expected, I thought, 'Oh my God, this is going to be someone who doesn't know what they're doing. It's just a junior person.' But she's been there for years and she was absolutely fantastic. She put my mind at rest. 

She made it, she built up a rapport with me and my husband straight away, and I went in there, although I was terrified, she made me feel very relaxed at the start, before we'd even sat down. Which I suppose is good, but then in some ways it might be setting you up for a big fall. But I mean, luckily for us it wasn't that. But she was really good, and as she was scanning me she was talking to the baby and saying, 'Oh God, he's a cheeky little thing, he's jumping up and down' and it just really made me feel at ease.

I mean I met, I saw her for half an hour, but in that half an hour she made me feel as if she really enjoyed her job, she wanted to do it. She didn't come in and say, 'Right, I'm not going to talk to you now for half an hour. Please don't talk to me, don't disturb me.' Which is what some of them do, some of them do say that. And she did say that, but she said it in a much nicer way. Yeah, it was, it just put me at ease, it made me feel more comfortable.

And you said that she put both of you at your ease. Did she pay particular attention to your husband?

Yeah, my husband's a very jolly chap, and he's very jokey, he loves chatting to people. And I think the husband is always, in every scan I've ever had, the husband is sort of like just someone that sits in the corner and is there to offer a bit of support. That's, I think, how the sonographers feel. 

But she, yeah, she had a, chatted with him, had a conversation, laughed and joked. I mean, I asked her and I know I shouldn't have done, I asked her if once she'd done the heart scan, if she would check for the sex of the baby. And she sort of jokingly said, she went, 'Look, the heart is the size of a grain of rice.' She said, 'I'm sure nothing else is going to be obviously standing out.' So we had a joke about it and, yeah, she made my husband feel part of it, which I thought was very good. And she said, 'Come and sit down here.' And she was talking to both of us, rather than just to me. 

Have you ever talked to him about how, whether he's felt kind of sidelined in'?

I haven't but when this happened with this scan, I said to her, I said to him, 'How did you feel about that?' And he said, 'It was really good to be, to feel like I was there for more than just to offer you support. It was my child as well.' So that, I thought it was probably the best experience, probably because they told me good news as well, but with the sonographer it was the best experience that I'd had.
 

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”.