Yes, we were then taken to a side room and given a drink, you know, and said they’ll come and get, call you for the CVS as soon as possible, but the doctor that was going to perform the CVS was just away at that time, he was in a meeting or something.

But I was the first person on his appointment list. So shortly after that – it’d be after about 20 minutes or so – we were then taken to the room where the CVS was going to be performed, and it was already full of doctors waiting. They were very good, you know, they explained what would happen.

But we were kept waiting for quite some time whilst they waited for this particular consultant to come and actually perform the procedure. Actually, I think one of the more junior doctors had expected that he would be performing it because he was sat there ready to do it and he was waiting for the more senior doctor to come and oversee it, but as it happened the more senior doctor came in followed by hordes of other doctors, because hes obviously very good at what he does and has a lot of people working with him, training with him.

So I think my husband counted that there were about 16 or 17 people in the room, at that point that, you know, he performed the procedure. And the other more junior doctor was kind of whisked out of the seat and he sat down and did it and it was all over within seconds. Absolutely amazing, I was put completely at ease, and it didn’t hurt, and it was much better than I had expected.

Could you describe what they do, because for other people, contemplating a CVS, it would be helpful to know a bit more about that?

Well obviously the first thing to think is that there is a risk of miscarriage associated with it and there is some explanation given to you of that. Then the doctor basically said to me, ‘Hold my arm’, so I held his arm and he got out what appeared to be quite a large needle. And I have an absolute fear of needles and I was convinced I was going to pass out, although I was lying down, but he literally just put the needle into my stomach and pulled it out, and within, I mean, it literally was seconds. It didn’t hurt at all. It felt like mild period pain, I guess, as the needle went in. And that was it, it was over in seconds.

They didn’t have a scan to guide ‘?

He had a scan as well, so with one hand he was holding the scanner and with the other, and that was the hand I was, or the arm I was sat holding on to, and he said, ‘Just, you know, grip it tightly if you feel any pain. And literally it was done in seconds, amazing, and I could see on the scan, I could actually see the anatomy of the baby for myself as well, while he was doing it.

Because there was, because the chap who did it was, you know, very well known for that procedure and he, you know, people just wanted to watch him at work. And I think I recall him saying that he said, “Oh, I’ve done this once or twice, but the last time I did it I had a manual with me,” you know, joking with us.

It was great and it really put us at our ease. And you know, I’d hope the students wouldve taken some of that bedside manner away with them as well. But it was, I mean a lot – because of the interesting aspects of our particular case, a lot of the times we were seen by the specialists there were a lot of young doctors in the room who were, you know, learning. And we had no objections to it. And I think that it’s important the next generation of doctors are able to, you know – if they get, you know, as good a care, if they give as good care as we got then, you know, the worlds in safe hands.

I’m one of these people that likes to look, like when if I donate blood or something, whenever theres needles. You know, the sort of conventional wisdom is, ‘Look away. I’m like, ‘I’m not looking away. If I can see what you’re doing and I can see it going in then I’m in, a bit more in control of the situation and I can psych myself up for it.

Otherwise you’re just sort of, you know, I’ve got no idea. You know, it’s a sort of ‘When are you going to torture me next?. So consequently I wanted to see. So the consultant sort of positioned the scan machine so that she, I was able to see the picture of the needle and the fetus, and see what was happening.

And I think they just put a little sort of numbing cream on your stomach, Bonjela-like, and just to numb the actual piercing of the needle through the stomach. So I had to obviously lie quite still. And then she put the needle through my skin and it felt like, similar to a needle going through a skin for other injections and what have you, nothing overly different to what I would have expected, except deeper;

And so I felt that prick going in, although it wasn’t painful, but I could feel, had the sensation. And then it moved in, and then it seemed to be moving through nothing. There was no resistance as she was continuing to push it. And then I could feel it on like a second layer of skin underneath, but this skin was much harder than the skin on the surface of the body. And she sort of pressed it and pressed it, and I could feel the pressure and feel the pressure, and then suddenly ‘phut’, it went through and it hurt a bit;

And I jumped – which obviously you’re supposed to keep really still. Heres the needle, heres the fetus, you know. You don’t want the needle to go anywhere near the fetus, and I just literally jumped, because it was really shocking. It went sort of, you know, it was pressure, pressure, pressure, and I just thought, ‘Oh, shell be sucking the fluid out now’, and she wasn’t. It was, it was the, literally the amniotic sac, very tough cookie;

And then shed managed, and then when she punctured through that it, you know, the, it really – it hurt a bit, but it wasn’t so much the pain that was a problem. It hurt a bit, it wasn’t hugely painful. It was the fact that it was this kind of, a major sort of pop through, you know. Pressure, pressure, pressure, pressure, pop. And I was just like, ‘Oh, my gosh,’ you know, sort of, ‘What are you doing? You’re getting straight into my very essence of being, you know.”

And then obviously I jumped and she sort of said, ‘Oh, you know, it is a bit of a pop, you know. And it, that was going through. And obviously at that point you realise just how invasive it is, really.

I was absolutely determined that I was going to be relaxed, because I was convinced that it was going to hurt if you were not relaxed. So I was going in with the view that, ‘OK, I’ve made the decision to have this, so, you know, I’m going to be relaxed, and were going to have it, and it’s going to be fine.

I know I think the midwife had said to me, ‘It depends who does it, she said. ‘Sometimes they give you a local anaesthetic and sometimes they don’t. And she reckoned that if it was a lady doctor, who could appreciate what it might be like, you’d get an anaesthetic. And if it was a man you wouldn’t.

Anyway I had a lady doctor, and they were, again it was great because you went in and she explained again, and you signed a consent and everything. And we also were very clear we did not want to know the sex of the baby. So that was written all over the notes at that point as well. And then there was, I think there were three people in there with us.

There was one lady who was actually going to do it, and then a kind of assistant lady, and then there was a sort of nurse that just kind of kept by my head and sort of was there for us, and not really helping in any way, apart from helping us. So it was very reassuring, because they were telling you what they were doing.

And they spent a long time scanning to see where the baby was in me, and try and decide the right place to go in. And the baby, you know, typically was wriggling about all over the place like they do. So I mean, again, that’s reassuring, because you get another scan and you can see your baby’s OK. And they did give me a local anaesthetic, which was OK – because often that’s the worst bit about something, I think, having the anaesthetic.

And then I was relaxed and I breathed deeply and did all the things they said, and it didn’t hurt me in the least. So I was very pleased about that result really, because I’d felt that I’d gone in with the view that, ‘I’m going to be relaxed, and it’s not going to hurt me, and it didn’t. It was fine. And they were quite reassuring afterwards, because obviously then you’re like, ‘I’ve had it, I’ve had it, you know. Now what’s going to happen?’

And they immediately then scanned again and said, ‘Look, heres the baby. You can see it’s OK, and, you know, whatever. So they tried to reassure me afterwards straight away by just putting the scanner on the baby and saying, ‘Look, theres the baby’s heart beating, It’s fine, it’s moving, you know. ‘We haven’t hurt it’ sort of thing.

So what was the CVS like?

It was awful, from my point of view. He explained to me what the procedure would entail, and I was terribly, terribly worried about causing the miscarriage myself, by moving whilst they were inserting the needle. So I was very tense, and I guess that makes the procedure more painful, more uncomfortable, because I just didn’t want to move even a fraction of an inch and cause that needle to touch the baby.

So I can remember I was crying, silently, and just gritting my teeth and clenching my knuckles, and just hoping that everything was going to be OK.

And what did it actually feel like?

Well, they told me that it wasn’t painful, but I disagree. I think it is painful. It’s not like having an injection, although it seems as if it should be. They insert the needle through your abdomen and collect a sample of the placenta, the tissue around the placenta.

And it felt, what I imagine being stabbed with a sharp implement. It had a sort of, a pressure to it. But it was, the pain only lasted while the needle was actually going through my skin, and then it was just uncomfortable as I was aware of something being inside my abdomen. It only lasted a short time so I don’t know, a minute, a minute and a half.

And your husband was with you throughout this?

He was with me.

What was happening to him at this point?

I didn’t find out until afterwards how deeply it hurt, affected him, watching this happen. And to some extent I think it almost affected him more than it affected me. I was living through it, and I didn’t have much control but I had some control. It was my body. And he almost felt that it was my decision, almost, and he was supporting me in that, and he found it very difficult to watch me go through the procedure, and deal with watching the threat to my baby on the screen. I was focusing on not moving, and he was focusing on the screen and watching the procedure, and watching the needle go in.

When you say that he was sort of, he regarded it as your decision and he was supporting you, do you think he was beginning to think ‘Ooh, I’d rather not be doing this actually’ or…?

I think it was a head-heart thing. With his head he thought it was the right thing to do, but he found it a very difficult thing to do and to watch. And he found it difficult to balance up his feelings of concern for me and his feelings of concern for the pregnancy.

It was quite traumatic because the girl that went to do it, she couldt do it. She kept trying to do it and couldt do it, and the professor had to come in and do it. But he was very nice, I mean he held my hand and he told me to squeeze, and he went, he stroked my hair and things like that.

He was very, very tactile, which really, really helped. Even more so than telling me what he was doing, which he went through, and you could actually – I didt look – but my husband could see on the screen exactly the needle going in and what it was doing. But I obviously couldt see that, but he was very tactile and that really, really helped me, I found, very reassuring.

Did it hurt?

Yes, very much so.

Were you prepared for that?

I was prepared for it to hurt, but maybe not quite so much as it did. And also yore very emotional, and I did lie there with tears streaming down my face, I know that. Because a lot if it is very – well, yore emotional anyway because your hormones are all over the place – but because of what yore doing, and also yore thinking about the risk of miscarriage as well, which hd explained to me. So yore thinking about that and yore thinking, you know, it’s just everything all to, at once. But it did hurt, yes.

Father’One thing actually also just to add about the CVS process – which is not to deter people from doing it, because again, you know, we think that, you know, you should have all the facts in front of you. But it was portrayed to some extent as being just a little prick in the stomach, and it was far from that. And again I think people should be aware that it is not just a little discomfort.

Mother’I mean people have different pain thresholds, but I found it to be extremely painful. I now know it was like having a contraction. I didn’t know that because this was our first child, and I hadn’t given birth before. And I now know it’s a contraction.

And they can’t, they can deaden your stomach but they can’t deaden your uterus. And so when the needle goes through there, it’s just horrendous, the cramp that you feel. It’s, you know, like a knife just going into your stomach. And that was shocking.

And they also say, ‘Whatever you do, don’t move. And I jerked a little bit because it was so invasive, and I thought, and I said, ‘Oh, I’ve moved. And they’re like, ‘No, were almost done, don’t worry. And I thought, ‘I’ve moved, and the needles going to go into the baby. You know, I just thought, ‘Oh . . .. That was, that was bad, wasn’t it?

Father’Yeah, but to, you know, just to reiterate again, it’s, it’s one of those things that, in spite of that, we think, you know, it’s something that people need to, you know, seriously consider and not just shy away from it because of the pain.

Mother’It was over very quickly and I didn’t have any complications whatsoever. Because they say you can spot. And after all the spotting I had, I didn’t have any after the procedure and they did a brilliant job.

And a doctor initially scanned me, and I think I knew quite soon that something was wrong because it was very quiet, and it went on for a very long time. 20 minutes later I was sort of still lying there thinking, you know, ‘What’s going on?’ And you don’t like to interrupt them because clearly they’re concentrating, they’re looking in detail at something so amazingly tiny.

And eventually she stopped after about 20 minutes and said that she thought she could see something, and she said that she thought it was a heart condition called tetralogy, but she wasn’t entirely sure because it was still very early. It was, I was still only 12 weeks pregnant. But what shed like to do is have one of her colleagues scan me and she wouldn’t mention to him what she thought shed seen. Shed see if he came up with the same diagnosis.

The other problem was that the baby was lying with his arm across the chest, so they couldn’t be sure that, you know, they were getting a clear picture. So they asked me to go off and walk around, jump up and down for a few minutes to try and get him to move. And then I went back in to be scanned by the male doctor, who again did something similar, sort of scanned for a while, got quite frustrated because the baby was lying in a bad position, but he said roughly the same thing.

And the other doctor, the female doctor who’d scanned me first of all, was in the room at the same time, and they had a discussion while I was there about what they thought it might be. But they both said, you know, that they couldn’t be certain, that I would need to come back in probably two or three weeks time after the results of the chromosomes had been determined, and that the condition that they thought it was quite often was associated with something like Down’s.

So there was a good chance that the CVS would cause a, you know, would highlight a problem. But they were very good and they drew diagrams of the heart and explained in some detail what this condition meant. And I think part of that was that we asked a lot of questions, but you know, they were certainly ready and willing to give the information that we wanted.

Would you have liked more during the actual scan rather than the silence?

I think so, yes. I mean, I think, you know, silence is just, it destroys you, because you’re thinking, ‘My goodness, what are they finding? What are they seeing?’ It would have helped for them to have just said, ‘I’m looking at the heart and I can see this is working OK, but I can see that there may be a problem in this area, but I’d like to continue scanning if you don’t mind. I need to concentrate, if you don’t mind if I’m just sort of scanning you in silence, and this is what I’m going to be looking for.

And I think that would have – OK, it would have unnerved me, but I was unnerved anyway, and to sit there or to lie there for 20 minutes not knowing what they’re finding, it’s quite hard.

And when they were talking amongst themselves afterwards, was that distressing?

That was hard but, you know, it was very quiet, but obviously we could hear because we were in a small room and there were only 4 or 5 of us in there. And obviously they wanted to have that, and it’s better that they had that discussion in front of us rather than leave the room because I would have just been beside myself and that would have actually been quite rude.

I couldn’t really hear what they were saying, and I couldn’t obviously understand because they were talking in medicalterms, but it didn’t go on for a long time. It was maybe only a couple of minutes of discussion and then they came, you know, straight back to us and said, “We do think we’ve both, you know, independently we’ve both come up with the same diagnosis. And that’s when they started to explain what that might mean, and they were very helpful. The first doctor that scanned me even gave me her mobile number and said, “In the next couple of weeks if you want to talk to me just give me a call, so they were certainly very open to helping and to communication.

Father’He did actually say at the time, as he was starting to scan, I think as he, his, a rough sort of pr’cis of what he said was, you know, ‘I will be talking to my assistant, I will be saying things. Don’t worry at all about what I’m saying, you know. I will explain everything to you fully after, but switch off completely to what I’m saying.

And then he proceeded in quite a precise and fairly sort of strong voice to list off this huge long list of . . . And of course I’d, you know, I’d spent, because we went, wed had the weekend, hadn’t we?

Mother’We had.

Father’In between the first two scans at our local hospital. And I’d spent the weekend on the internet, so all these things that he was listing off as problems I’m thinking, ‘Yeah, I’ve heard of that. Yeah, I’ve read that one.

Mother’Our consultant at one point, when we were going through this and I’m saying, ‘Well, yes, what about such-and-such and such-and-such?’ And hes saying, he actually turned round to me and said, ‘Look, in fairness, you probably know more about Patau’s syndrome than I do. Which was, you know, at that point that was an admission that it’s a learning curve for everybody and they don’t necessarily know how to – is there a right way or a wrong way to deal with somebody who’s been told that their baby’s going to die?

And looking back to that specialist scan, were you happy, really, with the way that it was handled or would it have been better to have been involved from the start rather than having the list of things reeled off?

Mother’I don’t know. It was so intense, and I only ever felt that he was doing his job to the best of his ability.

Father’Yeah.

Mother’Not that he was trying to hide things from me. He wanted to get everything. And the trouble was if hed have said to me, ‘Oh, theres an abnormality with his brain and with his head, I’d have been like a hundred questions about that one thing. Where that would have held up the rest of the scan.

Father’Yeah.

Mother’So with him —

Father’He did have a job to do, I mean.

Mother’He scanned me very professionally. He was very nice. You know, he did say to me at any point that I wanted him to stop he would have stopped. He was great and I did feel —

Father’A box of tissues was always handy, wasn’t it?

Mother’I did feel that he was very professional about what he did, the way he spoke and the way, the way he spoke afterwards was great. There was no rush, there was no nothing, and he explained every one of his symptoms thoroughly. And he could do it better that way than trying to do that whilst he was scanning. Although the upset was there.