I was a bit worried about it, because they’re sort of putting a large needle into your stomach, which you know was a bit alarming. But I think, to be quite honest, by that stage I was in such a shock, and anything could have happened, you know it felt like anything was possible on that day. Then I don’t know, I think when you’ve been given such bad news that you’re not expecting to hear all sense of judging things, a normal way of judging things, goes out the window, in that particular time and on that particular day.

And it felt like the goal posts had moved. I mean I hadn’t wanted to have an amnio in the course of a normal pregnancy, and that’s why I’d gone for the nuchal scan to sort of try and get more information. Wed done that, wed got more information – and there were problems – so the goal posts had moved really. It wasn’t a normal pregnancy any more.

And I am the sort of person I think – I’m sure lots have said this but I don’t know if everybody is exactly the same – I’m the sort of person who needs to know, I’d rather know. So there was no way I wasn’t having that CVS. And it did feel a bit like, ‘oh gosh’ you know, but she seemed very experienced, the consultant that did it, and I felt very confident in her that she knew what she was doing, and I sort of thought, ‘Well, I’m prepared to take the risk. I’m prepared to take the risk. If it will cause a miscarriage, we need to know what’s going on here, and this is the only way were going to find out for sure.

What was the amnio like, can you describe that for me?

It was absolutely fine. It didn’t hurt at all. It was just they put some gel on you – well they scan you first of all to see where the baby is and because they don’t want to touch the baby obviously, with the needle – and they’re looking for a bit of the amniotic fluid that they can get into without touching the baby;

So they just scan you and put some gel on your tummy, like antiseptic sort of, antiseptic, what’s the word I’m looking for? Anaesthetic gel, and put a needle in. It wasn’t sore at all, I mean, I thought, it was like ‘Oh, this horse needle going in’, but it really wasn’t sore at all, not for me anyway;

And you, and they tell you about all these different rates that people have for amnios because it is, I think, up to, for up to a month afterwards you have to sort of be careful, and you might lose the pregnancy through that. So that’s another, that’s another thing you have to think about, that was another consideration;

We were going for an amnio and the threat of a miscarriage after that is very real as well but I think what swung it for us was that we were dealing with a life-threatening condition. I mean, if it had been something like Down’s of spina bifida or these other ones that are along a spectrum, I don’t know what we would have done. But it was the fact that we were dealing with something that the baby was going die, we took the risk of having the amnio but it wasn’t sore, wasn’t sore at all;

But the whole gamut of ideas’ anyway the next day I, we went up to the [city] teaching hospital and we saw the consultant there, who was absolutely out of this world, he was absolutely superb. And he said that he also did find that, he wondered if both babies had Down’s syndrome or probably something similar and what he suggested we did was have a CVS taken from both placentas.

Because I was expecting twins obviously they were, they were non-identical, and we didn’t know they were a boy and a girl at that time, but I think he could probably tell. And so he took a CVS, a sample of the placenta from each baby. And he, they couldn’t actually manage to do the CVS, so they had to do it again. So it was really uncomfortable and it was, as well as being totally bogged down mind-wise, it was actually very uncomfortable as well. And he then said basically, ‘What you now do is wait. You wait for probably up to two weeks. Well get the results back to you as soon as we possibly can. As I say he was absolutely lovely.

And the next two weeks were, oh, absolutely horrendous. It’s difficult thinking about it even now really. We just, you know, well, I basically, I think I sat on the sofa for two weeks, because after having had the CVS they said, ‘Theres a slightly increased risk of miscarriage. So I was very scared about that. And I just waited. And I was on my own at home when the phone rang, and it was, I think it was a midwife or one of the counsellors that, at the hospital. And she said, ‘Are you on your own?’ And I said, ‘Yes, I am. I said, ‘But I just need to know. I didn’t want to wait for anyone else to get there. And she said, ‘It’s a boy and a girl.

And the midwife said, ‘You’re expecting a boy and a girl, and the boy has got Down’s syndrome, the little girls fine. So on one hand it was the most immense relief that our little girl was fine, but we were devastated. And I think I phoned my husband at work, and I think he was very like me, he just wanted to know. And I felt very mean telling him over the phone, but I had no choice because again he wanted to know.

And I have every test under the sun. I had, I’ve had the three amnios, and I would always have an amnio again because once you’ve had them, all the things you read in books about how they’re great big needles and about how potentially dangerous they are, I didn’t worry about that in our local hospital, which is a very good teaching hospital, a very big hospital because I know how skilled they are, how many they do a year, they do a great number. And I think a lot of the statistics are based on smaller hospitals where the staff have less experience, and that’s where the possible problems can occur. But I’m not particularly prone to miscarriage because even with these babies that were in a real state I never miscarried, I never even bled with any of them. So I’ve always gone for amnio.

I was nervous about having the amniocentesis, and I was also nervous because I read and I was told by the consultant, that there is a slight risk of miscarriage following the amniocentesis test. And one of my worries that I would have the amniocentesis test the baby would be fine but I would miscarry, and I felt that if that had happened I would blame myself because nothing was wrong and that I’d have gone for my peace of mind and I had caused this to happen.

The amniocentesis test is so I still wanted it even though that risk had been explained to me. I felt that that slight chance was a risk that I needed to take.

The test itself, it was uncomfortable and it was slightly painful, it’s not the worst pain I’ve ever had. But, it was explained to me all the way through by the consultant, what he would do, and he encouraged me to, and my husband, to look at the screen. And he said, he was doing that to make sure that we knew that he was performing the test safely and that the baby wasn’t being harmed by the needle. And he encouraged us to look at it.

Once hed done the test, he just told us that it would be sent away, and the results would come back, and he left the room. There was no other explanation. We were basically left to get ourselves together and go home.

Well I had the amnio at the first appointment at the big hospital. And it was one of those things where they say, ‘This is a slight discomfort’ was how they described it [smiles]. I wouldn’t describe it like that.

And they pushed the results through quickly so that they’d have them ready.

How would you describe the amnio, in your own words, could you tell me about that?

Well the amniocentesis its like having a red hot poker put into your stomach it is unbelievable, unbelievable, because the other thing you have to do is stay still, you have to stay completely still, and they obviously watch on a scanning machine while they’re, to make sure they get it, the needle in to the right place.

And as I say they describe it as ‘mild discomfort’ it’s rather more than ‘mild discomfort’ in my books.

I don’t think the amniocentesis took more than a few minutes. But the, because of the lack of amniotic fluid he had already said, he might ‘I might have to do this again, if I don’t get a pocket straight away I’ll have to go in again,’ and I was, and this was while he was doing it, because it hurt so much, I was just praying that he was going to get some. And he did.

I think, to start with they came back with, theres one result comes back quite quickly from the amnio, so I think three or four days later the result came back for Down’s Syndrome, and it was clear, everything was okay.

I think that came on a Friday afternoon again, ironically, and we sort of spent the weekend with a think false hope, because we just thought, ‘Well if that’s okay. that was the main one, because no one had really told us about the other things they were checking for. And it was always the focus was always on Down’s Syndrome, and spina bifida.

So I think it kind of gave us hope that well probably things are okay – if that main one is okay, things might be okay. Then, I think it was a couple of weeks later it took about two weeks for the full results to come back. And we were just waiting for this phone call from the hospital. And normally it would be a midwife in the scanning department who would just phone and say, ‘Things are okay. And it was the consultant herself who made the phone call.

And I remember it was lunchtime here when I answered the phone, and she said who it was, and I knew immediately that there was a problem with the baby, because I just thought that she didn’t make routine phone calls to tell you that things were okay.

And I immediately said to her, ‘Oh but the Down’s syndrome result came back and it’s clear. And she said, ‘Yes, but it’s picked up another genetic abnormality with the baby. And she asked for my husband and I to go into hospital as soon as we could. So we knew because of the sort of, immediate thing she wanted to see us, that something was, was badly wrong.

We made arrangements for our other little boy, and we went straight in that afternoon so within a couple of hours we knew, that the baby had Edwards’ syndrome. And we were told that it was ‘incompatible with life, that was the phrase that was used by the doctors.