Father’And that’s actually another part of, you know, the post-procedure situation is that you still then get bits of information from the system. The system still, you know, if you’ve registered with, I don’t know, Tesco’s or Mothercare or whatever, or the actual health authority itself, still certain parts of it still churn out bits of information. My wifes pregnant again. We went to the hospital recently to have a scan and we got through all that touch wood okay, only to find as we were driving back home that they’d given us the pamphlet of information —

Mother’For [baby’s name].

Father’For our baby [baby’s name] that we lost last year. And we went…

Mother’And I’m going back and I’m looking for the results of the scan and, and I was saying, ‘What?’ I opened it up and I’m seeing results and things from the first pregnancy. And I, then I flipped back to the results of the 12 week scan and sure enough there it says, you know, ‘1 in 32 chance for an abnormality. And so I said, ‘Turn the car around’, because we had the wrong pregnancy folder.

So I walked back in and it was, you know, the receptionist’s desk, it was very close quarters, full of women. And I said, ‘I’m sorry, you’ve given me the wrong folder. She said, ‘Oh, is that not you?’ I said, ‘No, this is me, but this is not the right pregnancy. And she said, ‘I’m sorry? I don’t understand. I said, ‘This is my baby that’s no longer alive. And everyone just goes zhoom and looks at me, you know. And then she goes, ‘Oh. I said, ‘Check the hospital folder. And so then she just switched it and she says, ‘Here you go. Cheers. No ‘I’m sorry. Nothing. Nothing. Just —

Did you ever complain about that?

Mother’No.

I mean you must have gone through a kind of split second of thinking, ‘Is the same thing happening again?’ Or did you realise straight away it wasn’t the right one?

Mother’I realised straight away it wasn’t the right one. But I just couldn’t believe that she didn’t then apologise. Because of course when you go to the hospital you have all of your records from any type of pregnancy.

Father’I think part of the issue also is because, you know, were expecting a child again now, you don’t want to upset the apple cart. You just want to sort of, you want to keep all the professionals on side and working–

Mother’We don’t want to be, you know, the problem people.

Father’Yeah.

Mother’We don’t want them to then not want to see us walk through the door, and not give me that extra little shot of pethidine, you know.

Father’One of the elements that went through our minds was with CVS there is a risk of miscarriage.

Mother’Yeah.

Father’Which is, is it 1 in 100?

Mother’Yeah. They say 1 in 100.

Father’Theres a 1 in 100 risk of miscarriage, albeit that’s the nationwide statistic. And although they don’t publish it, the impression we get is that the hospital we went to, probably because of the people who are involved there, actually had sort of a better risk analysis, if you like —

Mother’Yes.

Father’Of not having miscarriages and so on.

Mother’Our consultant explained to us that it’s a national average, and they group in doctors that do it once a year to doctors that do twenty a day. And where we went they’re doing them all day. And he said, Really, you know, we can’t publish the actual risks, because we have to go off of a national averag

But he said, he mentioned that he does a certain procedure, that it’s a 1 in 100 risk, but he said his actual risk is 1 in 4000. So that reassured us. But we were terrified that we would miscarry a healthy baby by having this invasive test.

And we were frightened, but the odds were so poor that we thought, Oh, were going to have to risk i. The risk obviously was worse for an abnormality than it was for the miscarriage.

Father’And that’s actually an interesting point, because we have another friend of ours, who does have a Down syndrome baby. And her analysis, her initial screening analysis I think came out at something like 1 in 400, and she made a judgement call at that point not to go on and have CVS or amniocentesis, and has had a Down syndrome baby.

And so there is a judgement call between, you know, the 1 in 400 risk, where you may take a view on it, down to where we were, which is 1 in 32 on the triple screening, or if you looked at the blood work, of 1 in 6.

And I think, you know, we didn’t have any real doubts about going for it, albeit that, you know, then in the back of your mind theres another element, you have, Oh, what if weve got a perfectly healthy baby and we lose it because weve gone to do this checking

But it was only a small element in the back of our minds, rather than being a serious doubt about going ahead and getting the CVS.

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.

Mother’So we went for the CVS, and they called us a week later to say, ‘It’s not trisomy 13, 18 or 21. And do you want to know the sex?’ And I said, ‘Yes. And they said, ‘It’s a girl, congratulations. And then she said, ‘You won’t get a letter to your GP for another two weeks because we have to grow the karyotypes and check for some really rare disorders.

And I said, ‘Oh, like what?’ And she said, ‘Oh, I don’t know, they’re so rare, there are so many. And she really didn’t give it, she should have said, ‘Look, you’re not out of the woods yet. Because we told everyone then. We thought everything was fine, and we rejoiced.

How did you find out about the Turner’s? Did you get another phone call or…?

Mother’Yeah, it was another phone call, and because wed had the positive phone call, I was cooking dinner at seven at night and, you know, ‘Hello. ‘Oh, this is the midwife calling from the hospital. And I just, my stomach dropped and I knew, because why are they calling me? They’re not supposed to be calling me. And then she told me. And you know that feeling you get in your stomach? It’s just horrible.

Father’But I don’t think theres any good way of telling somebody that sort of information, because if you say, ‘Oh, we need to make an emer-, you know, an emergency appointment with you to come in and tell you something then you’re left, you know, dangling then as well.

Mother’I’m glad they told us what it was so that we did have the evening to start to do our own research before we had to speak to the consultant.

Mother’But yeah, once we knew it was the most severe case and once the consultant looked at me and said, ‘How pregnant are you?’ And I told him, and he said, ‘I can’t believe you’re still pregnant. Most of these are gone by 11 weeks. And that’s when I kind of concluded that I was trying to miscarry for thirty days and my body just held on. And it was a bit cruel, really, that my body held on but…

Did you think about just letting nature take its course?

Mother’I don’t think we ever did.

Father’No, I don’t think so. I mean, we had, because of circumstances we had, you know, time to think about what we were doing. You know, it wasn’t a ‘see the consultant and then 24 hours later proceed with the, the termination.

Mother’We actually waited.

Father’There was a fairly lengthy period. So we had time to reflect.

Mother’Because at that point I would have to give birth anyway. So we waited about a week and a half before we did that, which was…

Father’And there were moments when we, you know, you have doubts. You think to yourself, ‘Is this right? Are we playing God?’ and so on, you know. ‘Should nature take its course?’

Mother’We still don’t know that we did the right thing. We just, we made the best decision we could with the facts that we had at the time and we did what we thought would be the best for us as a family and for our child. You know, I can’t say that we only did it for our child. We did consider us as a family and taking care of a child, and not knowing how bad it was going to be, if she was born alive.

I mean, the consultant said, ‘I don’t think shell be born alive, and if she is born alive shes going to need instant surgery, and I don’t give her long. Five years tops. And I thought, ‘I don’t want my child to suffer. I would rather have to live with this the rest of my life than to see my child full of tubes and know that . . .

I felt that was selfish for me to do, just so that I wouldn’t have to deal with what we now have to live with. But it was just heartbreaking to have that be our first decision as parents. So that’s the hardest part.

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, spines all okay; no spina bifida, okay; brain lobes are there; no hydrocephalus. ‘And weve got, theres the kidneys, and theres 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, heres the stomach. Do you see that dark circle? That’s, shes 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.

We were trying for about four months. And became pregnant. But then I had a lot of problems. I bled for thirty days, so we had tons of scans to check for miscarriage but it had all stopped by the time we went for our 12 week scan and – which was our second wedding anniversary.

And so they did the non-invasive tests, which at our hospital is nuchal fold, age ratio and a blood test to give you a combined risk for trisomy 21, 13 and 18. And our testing came out a 1 in 32 chance for Down’s syndrome – that’s what it flagged under. The blood test alone at our hospital said 1 in 6. So they recommend anything under 300, 1 in 300, that you go on for a CVS.

And with Turner’s syndrome it usually, the physical symptoms start in the second trimester, because that’s when the oestrogen is needed. And if you’re missing your second sex chromosome you don’t have any oestrogen, and that’s when things start going wrong. And swelling and cystic hygromas, fetal hydrops, heart problems, all of those things show up later.

We feel actually fortunate that our hospital was able to pick up so early, because the nuchal fold came out fine. A lot of times actually with Turner’s syndrome it will show a raised level of nuchal fold, but it was our blood test that actually flagged it.