Antenatal Screening

So on the Friday morning we went to the NHS hospital for the anomaly scan, and my expectation of that was to be told that everything was fine, and the sex of my baby. And that was, that was all I thought was going to happen, because there couldn't have been anything wrong because everything so far had told me that everything was okay.

And even though I read the leaflet that said, you know, this condition and that condition and - none of it really sunk in and it wasn't, everybody had suggested to me that the scan was to make sure that everything was right, not to tell me what was wrong.

And, you know, I can look back and think, how stupid I was that I didn't actually stop and think, why is the NHS investing this money in me if everything's going to be alright? I mean, they're doing it for a reason and the reason is, the negative reason rather than the positive one, but I just didn't, neither of us thought that. We just didn't think that at all.
 

Yeah, so they really couldn't see very much with the screening at all. Obviously they could tell there were, you know, he had 2 arms, 2 legs but they, every time they said, 'Well, if you want to come back we can try again, perhaps he'll have moved, perhaps we can see more, but it's really up to you.'  

And I can't remember whether they actually said in so many words, you know, 'You probably don't need to worry, because you've had one healthy child', but that was definitely the message I got. You know, maybe that was me sort of reading between the lines, but I felt no pressure from them to come back. So I was thinking, 'Umm, maybe I will, maybe I won't'. 

It got to the 21 or 22 week stage where they do the last scan and he was still in the breech position then, so again, they couldn't see his heart and said, 'It's up to you, if you want to you can come back one more time.' But by then I was 24, 25 weeks pregnant, we'd gone quite a long way now and I sat there, I had [daughter] with me who was, as I said, 13 months, whatever she was.  

I sat in the waiting room for 2 to 3 hours, I think I must have been the very last one to be called. And that was co-incidence. There was no reason at stage to suspect that anything was going to be wrong on this, you know. And I, at one point I got up to walk out and I said, 'Look, I'm really sorry, I've got another toddler here, I haven't brought endless supplies of bottles and things for her, you know. If it's not soon, I'm going to have to go.'  

And they were a bit grumpy and said, 'Well, we're very busy, we're coming as fast as we can.' And I said, 'Well, I understand, but I think I'm going to go.' And I got as far as walking out, I was halfway out the door and they called me back and said, 'Okay, you can go in now, you can go in now.' And so I went in, and that's when I found out.
 

Mother' The lady that scanned me first of all at [local hospital] was very thorough. And if it hadn't have been for her, we would have never ever have known. And I would like to thank her and I can't remember her name but I would like to thank her very much, because if she hadn't have pointed these things out in the first place, we'd have never have got to [specialist hospital], we'd have never had the amnio, and we would have never have known until the day he was born. And if it weren't for her being thorough . . .

And did she talk to you at the time?

Mother' She did.

Was she pointing, saying, you know, 'I can see a problem and I'm investigating further', or...?

Father' It was very much --

Mother' Yes, she did.

Father' You know, at, at the start it was, 'I'm a bit concerned. You know, I can't see baby's lips. He's in position'. It was quite sort of friendly and jokey. You know, 'Little bugger, I wish he'd move his hand' says the sonographer.

Mother' Yeah. 'Babies lay in funny positions, he's turned over -- he's not in a good position'. 'You can come back another day he's in a better position, I can get some better pictures for you'.

Father' It was very much, you know, even at that stage, it was very much, 'He's doing this' not, 'It's doing it'. I mean when the problems became apparent, both sides of it were explained to us, you know. I mean, like with the dilatation of the kidney, it was explained to us, because it looked at the time on the scan that we were going to be having another little boy, which is how it turned out, she said, 'It's quite a common thing with little boys at this stage of scan for them to have slightly dilated kidneys if they've got a constriction in the urethra'. 

She said, 'It can also be a marker for other problems though'. You know, so we were never really under any illusions from that first scan that there could be some very big problems. But they were explained to us very well, weren't they, in sort of fairly simple terms?

Mother' Yeah, and they weren't too intense, they were very much, the fact that that's the way he was laying and that's why she couldn't see properly. And she did the right thing by bringing us back and sending us for walks and, and then eventually off to [specialist hospital].
 

The natural thing is for the professionals to talk to each other, rather than to you, isn't it? Because they want to confirm what they're seeing, they want to bounce ideas off each other and, you know, 'Is this right, is this what we think it is?' And da, da, da. 

So I'm very much conscious of lying down, and you're at a disadvantage because you're lying down anyway, and sort of 'What, what, what? You know, can I? I'm here. Can you tell me what you're seeing?' And they didn't want to, because they weren't even sure what they were seeing, so that was quite difficult. I've been in that sort of situation at other times since then, although not to that extent perhaps, where the conversation is going on over your head while you're there and you're not included in it.  

You're supposed to hear it but not interrupt and wait until they've finished deciding amongst themselves what they've decided and then ask, you know. That's never ideal. But on the whole I feel very lucky. The experiences we've had with the hospital have you know, on the whole been very good and I think the level of care there is very high and I feel lucky we're in that hospital.
 

We sat waiting and I think it were an early appointment, probably 9 o'clock, something like that. We were called in quite quickly, like laid down, gel put on, and she's scanning away, but she were quite silent throughout and not, sort of, not absent but sort of not there as well, you know. 

She weren't talking me through bits like I'd had in my early pregnancy scans. I'd been, 'This is the head, this is the legs'. And she just said, 'It'll take a while, you know. I've a lot to see' and then quite silent then. She were saying that baby were being awkward and she couldn't see the spine I think she said, so if I could get up and go to the toilet and come back, which at this time my bladder were absolutely bursting anyway so I were quite relieved, but I went to the toilet thinking, 'Is this right? is it normal?' -  because I'd not had an anatomy scan before - 'Was it normal? Were the baby hard to move? Or were it something she were just saying?'  

So I came back and laid back down again, and she says, 'Before I continue I have to tell you we think there's a deformity in the baby's spine'. So she took off some photos she took of the baby, she took them to a consultant and then came back. At this time we just, it hit us then, 'Oh no, this is what my husband's stepbrother, you know, stepbrother had'. 

But I had heard of, you know, a little bit more of, more severe cases of spina bifida, so I knew it was a little bit more serious than what, you know he suffered at birth. She said she'd get the consultant to have a chat with us and refer us then to a more detailed scan at another fetal unit.

So we were then ushered, crying, back through the antenatal waiting room where all the mums were waiting with their bumps, waiting to be seen, into a quite clinical midwifery room, where the midwife came to see us, who were really, really nice. She couldn't tell us any more because she weren't in that position to tell us anything, just offered us a bit of sympathy and a cup of tea, biscuits and use of the phone, you know, if we wanted to phone are parents or whatever.

Looking back at that would you have liked her to do it differently?

I would have liked her to have gone through and said, 'Right, okay, well the baby's head's fine' or, 'he hasn't got a cleft palate' or all this, 'but I'm just a little concerned about the baby's spine'. I think I would have been more prepared then. Because when I went to the toilet and came back and she said, 'I've got to stop now, I've got to tell you this' and I were just so shocked then.  

Rather if she'd have said, 'Oh, I'm just a little bit concerned about the spine', and then if it had been unfounded and she'd said, 'Oh no, it's, you know, it's fine' I would have probably worried, thinking I would have a second opinion, but I think I'd have been more prepared for it then, rather than her staying silent and just sort of, you know, bringing it upon me as I come back from the toilet.
 

Yeah, I mean it's difficult, isn't it? I mean, I think even in the kind of tone of their voice. Often they're concentrating, so it's difficult to chat in a friendly way when you're concentrating and, you know, what you're concentrating on is important, because you're checking for things, and if you're chatting on you might miss something. 

So, well, I don't know, a bit of reassuring chat and perhaps a quick scan to say, 'Yeah, here's the baby. It's wriggling about. I've got some stuff to do now', I think, I tend to feel that that would be important, and a best way of doing it, so you get a little bit of initial reassurance that, 'Yeah, so far everything's OK, but I've got my job to do now and, you know, I'm going to need to concentrate on that.' 

And I don't know, sometimes just the tone of somebody's voice, if they could be a bit more friendly before they switch off to do their job it would be better I think.
 

The woman was good in a sense. She said 'I just want you to know this is a check for, you know, all the major organs and so I'm going to be quiet for a while as I scan the baby and check everything'. And I said, 'Thank you for telling me that'.  

Because if she would have been quiet and not warned me I would have thought something was wrong. But as it was she did take too long before she said something, and the tears started falling from my eyes because I thought, 'It's going wrong'.

I'm a constant feedback person. I would have appreciated, 'Yep, spine's all okay; no spina bifida, okay; brain lobes are there; no hydrocephalus'. 'And we've got, there's the kidneys, and there's the stomach', you know. 

She did do that afterwards and, because I said, 'Show me the spine' and I'm looking and, 'Show me this'.  And she said, 'See, here's the stomach. Do you see that dark circle? That's, she's swallowed fluid'. And then we actually saw her - we think it's a girl -we saw her swallow fluid, and I thought, 'Oh, that's good'.
 

And then I went for my 20 week scan, which I always know is quite a big one, in that they look at every part of the baby's body, and the heart and the kidneys, and the liver and the stomach. And the scan was, seemed to be going fine and then they noticed that the stomach was collapsed. And well, that was quite traumatic, because I didn't understand what a collapsed stomach meant. 

I thought maybe that meant it had sort of no stomach. And she scanned the whole baby and she said that everything else seemed absolutely fine, but I'd have to go and wait in the waiting room for 20 minutes, to see if the stomach filled during that 20 minutes. Because obviously they needed to know that the stomach was functioning properly.

And that was very traumatic because, you know, I was sort of given no extra information at that point, so you're sitting for 20 minutes thinking, 'What does this mean? Does it mean that the baby can't eat, has got no digestive system? Or that the stomach isn't going to work, you know? How's the baby going to work if this key element is completely collapsed?' 

So then I went back to be rescanned and the stomach was still collapsed. And she said I would have to go and wait, and she'd come out and talk to me. I felt where I had to wait was really quite distressing. It was like a sort of a red room. I mean, she was lovely and dealt with it brilliantly, but waiting in a little sort of red room, which you really felt was like the bad news room, was horrible.

And she came in, and my husband's always incredibly to the point and blunt, and said immediately, 'Does this mean we have to terminate?' And she was very honest and said, 'Absolutely not, but it could be either a), it could either be [reading from notes], there's a possibility it was oesophageal stenosis or tracheo-oesophageal fistula', which are two conditions which mean that the baby can't swallow properly. 

I think what was quite hard was I felt I was given a lot of information about those two conditions, on what could happen, without them definitely knowing that that was it.  
 

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'.
 

So, we turned up at the x-ray department, didn't wait at all, went in and met the sonographer, who said sort of very early on that he was not really that interested in screening pregnant women, he found them quite boring. 

He was more interested in screening people that had problems that he can investigate so that was things like kidney problems or, you know, something wrong with their internal organs, and that was far more interesting than screening pregnant women. 

And to let me know that, you know, within the next couple of weeks he was handing it all over to the maternity unit because he wasn't that interested in it.

Which filled me with joy. And the way that he set it up was that he got me, his screen, the screen was by my head facing him and he made me sort of tilt slightly down, which was his particular technique for doing the screening. And my husband stood sort of in the corner of the room and I think he could see the screen but I mean there wasn't really any facility for him to sit near me or, you know, be able to - it was almost like he was, it was irrelevant that he was there. 

And off he started and again we saw the baby on the screen. Sorry, he saw the baby on the screen. And he was chatting away about all sorts of bits and bobs and then he said, 'Oh, I'll show you this' and he showed me the spine. And then he turned the screen away and he said, 'Oh, that's funny.' 

And then turned the screen towards me and he showed me the baby's hands, and they were in a position like this. And I looked at the screen and I thought, 'Oh gosh, what's wrong with his hands?' And he said to me that they would keep watching for a minute and they'd probably move. And so we watched for, I don't know, maybe 2 or 3 minutes and they just, his hands didn't move at all.  

And I thought, 'My God, we're going to have a baby with funny hands.' And I started crying and I just thought, 'Oh crikey, you know, what are we going to do? He's going to have, he's going to have to spend his life with these funny hands, and how awful that would be.'
 

And then the sonographer turned the screen back again and he said to me, 'Have you got the results of your anomaly - of your nuchal scan?' And I said, 'No,' and he said 'Oh. Oh well, there's probably nothing to worry about. Hang on a minute.'  

And he got up, and he went and got a book off a shelf and sat down and started reading through this book. And I said to him, 'Is there something wrong?' And he said, 'No, no, nothing to worry about.' And then he came back, and then he said, 'Oh', he said, 'I can't find it's stomach. Oh well, sometimes that does, you know, that can happen,' because babies at - I can't remember what, what stage in their development - but start to drink amniotic fluid, so you can see that in their stomach and you can see it in their kidneys, and he said - and their bladder - and he said, 'Well, we'll wait a bit and see if it happens.'  

So then he went back to his book and started reading whatever it was in this book. And I was really panicking at this stage because I thought, you know, 'There's something not right and I don't know why he's not telling us.' And then he came back again and he said, 'Oh, and I can't see it's kidneys, and I can't see it's bladder. Oh, right, okay. Well, hang on a minute, I'll be back in a minute,' and he left us and went out the room.  

And I thought at that stage my husband came over to me and I just burst into tears, I mean I was just having hysterics, absolute hysterics. And he was gone for about, I don't know, 10 minutes? Left us by ourselves. And then he came back and he said  'We need to do some more tests on you. We're going to take you over to the maternity unit.' And I said, 'Why, what's wrong?' And he said, 'Oh, there's nothing to worry about.'  

And then he walked us through the sort of underground tunnels of the hospital, rather than through sort of all the public areas, and I couldn't believe what was happening. Anyway we got to the maternity unit and we were met by this wonderful woman who just put her arms around me and she said, 'Come on, let's go and look at your little one.' And it was the first time that somebody had kind of referred to the baby in a sort of a soft way.  

And so she took us into another room, and the scanner that she was using was a similar level to the one that we'd had for the nuchal fold, and it was, you know, extremely high-tech. And she sat there for about, I don't know, maybe half an hour in complete silence, didn't say a word to us. And then she finished and she turned the screen - we couldn't see the screen, so it was again the same, that she was looking at the screen and I was sitting sort of with my head behind the screen. 

And she said to me, 'Okay, I need to tell you that the following things are wrong with your baby.' She said 'His brain's not formed properly, and his heart's not formed properly, and he's got no stomach and no kidneys and no bladder, and he's small for his age, and he doesn't have this part of his arm and his hands are malformed and he doesn't have the sort of upper part of his legs either.' 

And then she started talking - I have no idea what she said, I can't remember - but she just went into techy talk about that these were markers. I remember her saying markers, these were markers of a, something. But I wasn't listening, I mean, I was just crying and crying and crying. And my husband was crying, and we just didn't know, we didn't know what was going on.  

And I remember thinking, 'They've made a mistake, this can't be right. They've got, you know, the previous person’s baby on the screen, and this isn’t our baby, and he can’t be, he can’t be that poorly.’