Views on screening & feelings in later pregnancies
Looking back, most people were glad they had found out before birth there was something wrong with their baby, and thought screening was valuable in giving people information to make choices.
With hindsight, many felt they and other pregnant women making decisions about screening did not know enough about what could go wrong. At the same time, they did not want to frighten other women needlessly, as one mother explained (see also Interview 18 below ).
- Age at interview:
- Children' First pregnancy ended at 23 weeks, Occupation' Mother - Executive coach, Father - Chartered accountant, Marital status' Married.
I mean, I have to say that I think that screening is a good thing. It's a good thing because, irrespective of the stage during my pregnancy, it picked up that my baby wasn't well, so therefore it is hugely valuable. And therefore I think it's important that it's done.
My concerns with it are that the way that it is presented to pregnant women is not as rounded as it should be in that - I mean, it's very difficult when the majority of pregnancies are okay to be all doom and gloom.
And I am sure there is a, a very fine line between scaring the daylights out of people or making them think that everything's going to be okay. But at the moment I think that it is in favour of, 'Everything's okay. This is just to show you that everything's okay', rather than 'This is because things go wrong and this is why we're doing it.' And I think that follows from every piece of, every book that I've read, and every pregnancy book that I had, bought, borrowed, whatever, not once, nowhere in the book does it mention termination, anywhere.
And it's horrendous and nobody should ever want to read it, but it's almost like they should have a chapter about it - at the back of the book, hidden - that says, you know, somewhere, small print, 'If you want to know about this read it. If you don't, don't. But it's there for you if you need it.'
Because, you know, if we'd had the ARC [Antenatal Results and Choices] leaflet before we had any screening, if we'd had the information now that we had before the screening, we'd have done it differently. We'd have wanted to know who the best man was, and we'd have wanted to know what the gold standard of testing was. And we'd have gone there. And it wouldn't have mattered what it cost. For us, we're in a situation where that doesn't matter to us.
But, you know, again, if I could make it right, every woman should be able to have gold standard, but the resources aren't there to do that. Why? Well, I don't know. You know, that's a bigger question than I can answer. But you know, and it shouldn't matter whether you go to this hospital, or that hospital. It should be the same.
You should get the same piece of equipment, with the same qualification of person, doing the same test under the same conditions, looking for the same things. And that it should be followed up. That it shouldn't be reliant on the mother to come back and tell them what happened. That they should be able to track it, and the data should be shared through all sonographers, through the whole of the country, to make sure that, you know, that the risk factors that they give you aren't risk factors from 10 years ago. They're risk factors from last week, because it changes all the time.
She was concerned about uneven standards of screening provision, training and equipment around the country, and thought more data on screening risks and outcomes should be collected nationally.
The experience of discovering their baby had a particular condition or disability made some people question whether they would want to know another time. One mother and her husband disagreed about this. She considered not having any screening in her next pregnancies. Although she did eventually have screening, she now felt more aware that it cannot give definite answers and in some ways raises more questions.
- Age at interview:
- Children' First pregnancy ended at 23 weeks. 2 children (ages 4 and 2), Occupation' Mother - management consultant, Father - chartered surveyor, Marital status' Married.
I think losing my son made all of the antenatal screening a lot less black and white. You know, I think - you know, had I not had problems and someone had come and said, 'Well, we think you ought to have an amniocentesis', I'd have gone, 'Yep'. And if they'd have said, 'Oh, it's Down's', I probably would have gone, "Oh okay, you know. Let's have a termination".
But after losing [son] I think it's a lot less - you know, I really did think seriously about whether I wanted to have any tests at all. And yet with my husband, it was the opposite with him. He was even more wanting the tests, and wanting information, and wanting to know, and I think possibly more from a reassurance side of things, whereas I went the other way, and just sort of like, 'Well, I don't want to know if there's a problem.' Whereas he wanted the evidence to prove that there wasn't a problem, if you see what I mean. So I suppose different people have different reactions to it.
And do you feel it's made you feel differently about screening? How has it changed your feelings?
Well, I think you realise it's there for a reason, instead of just being one of the things you do as part of the routine of being pregnant, without really paying a lot of attention to it at all. I think it, I mean, I think screening is a good thing. The only problem with screening is it almost gives you more questions than answers, if there is a problem. So it helps you work out that there's a problem, but, you know, one small problem then becomes one massive problem, and there aren't any answers to that.
And then suddenly it all comes back to you and I don't, I wasn't ready for that. You know, you just think that screening is going to give you a yes/ no, and you know, nothing can prepare you for the magnitude of the problem, and the fact that it isn't just a straightforward yes or no.
Other parents felt more strongly than ever that they would want screening and would make the same choices. At the same time, many reflected that screening and indeed the whole of pregnancy have become a time of anxiety and tension for them, unlike other expectant parents.
- Age at interview:
- Children' First pregnancy ended at 20 weeks, Occupation' Mother - child minder, Father - upholsterer, Marital status' Married.
Did it ever cross your mind just not to have any screening at all this time round, or didn't it make you feel that way?
No, no, because I wouldn't want to bring a disabled child up. And not just - I feel probably a bit selfish saying it - I'm young and I couldn't see myself pushing a wheelchair or having to have an adapted house or things like that, and I've got plenty of years left in me to try again.
So I would want to know, always want to know if there was going to be something wrong. And not only that, for the child as well, you know. It's a cruel enough world without having a disability, than having an obvious disability.
And so your experience has made you feel more strongly if anything?
Yeah, we've thought more about disabilities this time and we've thought about, you know, everywhere we look now we see disabled children, whereas we didn't before. And we'll see people with a disabled child, an older disabled child, and then a young baby that was totally normal, and we'll just look at each other and think, you know, that could be us, you know, pushing that child round.
And no matter what, you know, you think about their, their lives and they're happy, but it's hard work for both the child and the parents. So, no, we wouldn't, we'd want to do, to make the same decision again.
OK, so looking back over it all, what would you say to other people going through the kind of uncertainties that you've been through?
A lot of people I know who are pregnant, it's brought it home to them the reality of abnormalities and probably scared them a little bit. Whereas I didn't know many people when I were pregnant the first time who'd had abnormalities. I weren't scared and it was such a happy time being pregnant that it, you know, it feels strange now, a bit upsetting really, that people go round rubbing their bumps where I've not got that, that opportunity any more.
I'm always going to be worried and pregnancy's not going to be a happy time for me, which is, it's not nice, you know, when you see other people that are so happy and they're unaware of abnormalities.
I wouldn't like to push it in people's faces because it would take away that happy time for them, but if people were going through, you know, the sort of things that we went through, I'd just advise them to look at every single angle and get more advice before you make your decision, to ring about the support groups for different abnormalities, whatever abnormality you're going through, and ask them the complications of bringing a child up with an abnormality or terminating the baby, and what choices you do have.
Even when screening tests come back with low risk results, the reassurance and relief is often short-lived, and several people said they would never feel really secure until they had a healthy baby in their arms. Some felt the need for frequent checks to reassure them the baby was still alive.
All the people we talked to who had had a termination had wanted another baby, and most were either pregnant again or had already had another baby. However, one mother explained how their previous experiences had made her husband doubtful about wanting another baby. He was reluctant to risk going through the same feelings of being out of control and unable to protect his wife from what was happening to her.
When pregnant again, people sometimes came across staff who were not particularly sensitive to their increased levels of anxiety, but many had found staff sympathetic and reassuring.
- Age at interview:
- Children' first pregnancy ended at 15 weeks, Occupation' Florist, Marital status' Living with partner.
And the 12 week scan that you did eventually have with this consultant who does her own scans?
How was that?
That was fine. I initially, was very, very nervous, almost to the stage of panic attack nervous. Obviously my partner was with me. When we went in to have the scan I told her what had happened and said that I was very, very concerned and I didn't like having scans and, obviously, about my previous experience, and she was fantastic.
She, as soon as she started the scan she made me feel comfortable, and as soon as she started she just said, 'Oh, the baby's beautiful' so I'd, although she didn't say everything's fine, she immediately acknowledged that the baby was a baby and was beautiful, so different treatment altogether.
Beautiful, whatever happened.
And was she able to reassure you at that point?
How did she sort of couch that reassurance, because obviously she can't be '?
She just said, 'I can't say 100% that everything's fine,' She said, 'But as far as, I've got no worries at all about this baby.' So she made me, she just spoke to me like a human, so she made me aware that she can't, she couldn't say 100% that everything was fine, but as far as she was aware she had no worries at all about the baby.
Administrative errors could be upsetting. In their next pregnancy, one couple were given the folder with scan results from their previous pregnancy by mistake.
- Age at interview:
- Children' First pregnancy ended at 17 weeks, Occupation' Mother - opera singer, Father (age 42 at interview)- chartered surveyor, Marital status' Married.
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 wife's 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?
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, we're 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.
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.
Some people decided that they did not want blood tests in subsequent pregnancies, but would rather rely on scans (see also 'Blood test screening'). The need for certainty rather than a risk assessment led some people to choose a diagnostic test such as CVS or amniocentesis instead of or in addition to screening tests.
For example, one woman went on to have an amniocentesis although her risk from the nuchal scan was 1 in 600, which was lower than the average for other women her age. (See also 'Deciding whether to have further diagnostic tests').
- Age at interview:
- Children' First pregnancy ended at 17 weeks. 1 child aged 11 months, Occupation' Mother - Job Centre Admin Officer, Father - Job Centre Executive Officer, Marital status' Married.
I mean I know I'm probably a bit sort of sceptical, but because I just think now, 'Well, nothing's, I can't leave anything to chance.' Because I did nearly and it proves, you know, that it can happen. So I was just being realistic really. I just thought, 'No, I've got to have more sort of reassurance that everything's okay.'
So I did think that I would probably want to have an amnio as well, even though not everybody does after having that result. They're quite happy with that. And maybe if I'd have had that the first time then I may have been, you know, but obviously I didn't.
So you felt that you had to pursue?
Yeah, like a double sort of reassurance, even though, you know, again I had to weigh up the pros and cons of miscarriage again, especially after having an amnio already in that year.
Another described how she and her husband disagreed about whether to have CVS, which she eventually did.
- Age at interview:
- Children' 1 (age 6), Occupation' Mother - full-time mother, Father - management consultant, Marital status' Married.
I was very apprehensive, because I was aware that not only had I had a previous Down's pregnancy but I am much older and I'm now in a sort of medium to high risk category. So I was very apprehensive. I certainly wasn't looking forward to it. I wasn't even looking forward to seeing a picture of my baby, because I didn't want to, I didn't want to get involved until I'd had, if you like, the all clear.
And we've had the discussion about the fact that you had these three risk factors being fed in and the kind of lack of clarity, really, about what all that meant. What did the risk factors come out at this time?
1 in 60.
Which is still quite high.
And I couldn't, I couldn't really understand where that number came from, so I decided that I would have the CVS. Actually, I disagreed with my husband on this one. He was happy not to have it this time. But I just felt I couldn't take a risk with my family, having already made the decision to terminate a baby with Down syndrome, and now being older and having a son already, I just felt that if we had a Down's baby that it wasn't only going to affect us as a couple, that it was going to affect my son. So I was less prepared to take a chance that the 1 in 60 would be OK then my husband was.
Did you talk much about his reasoning at that point? Why had he changed his views? Was it simply that it was three times less risk, or something?
Yes. And also I think it was to do with the statistics, and the fact that people weren't able to explain to us what the numbers meant, that he just felt the numbers were more spurious, and that if you took out the risk factor - that if you asked them to recalculate taking out the fact that I'd already had a Down's pregnancy, that the probability wasn't much less but it was 1 in 150 or something, and I felt that that still wasn't great.
He was happy to live with 1 in 150, and he just didn't accept that, the 1 in 60. But because I could never get to the bottom of where these numbers had come from I wasn't happy to accept the risk. I don't know, it's just this peculiar situation, but it did come down to the numbers in the end. That he was happy to discount them and I wasn't.
So the 150 or so, I mean, given that you'd been told that it was a 1% increase of risk if you had...?
I couldn't figure how we went from 1 in 150 to 1 in 60, because I'd had this Down's pregnancy. And - oh yes, we were factoring in another thing, which was a blood test. So sorry, there were four factors feeding in and I just couldn't, I just couldn't get to the bottom of all these different, different things and what they meant, so I sort of erred on the - I went, I rang ARC, and I asked them what they thought, and they suggested that I went through the process which was which decision could I live with?
So if I took the decision to have the CVS and had a miscarriage, would I find that an easier decision to live with than, 'OK, I'm not going to have the CVS and I may have a Down's baby.' Yeah, so I decided that I could live with the risk of miscarriage more easily than I could live with the risk, you know, the possible result that we were going to have a Down's baby.
In common with several other parents, she found it hard to understand why having previously had an affected pregnancy was automatically included as an extra risk factor, even though genetic testing had suggested it was a one-off event, not hereditary.
In contrast, some people who had thought they would need the certainty of a diagnostic test were surprised to find they felt differently after getting a low risk screening result.
- Age at interview:
- Children' first pregnancy ended at 13 weeks. Baby aged 6 weeks, Occupation' Mother - Housewife Father - financial analyst, Marital status' Married.
And how did it affect your feelings this time around as far as screening was concerned? What impact did it have on your choices?
It was strange actually because I had said - well, I fell pregnant very quickly and it wasn't actually planned - but I had said that I would have everything done, that I would have the nuchal scan - obviously I'd have that anyway - and I would have a CVS or amniocentesis. I would have that done, because I would need to know a hundred per cent. I'd also had genetic counselling at a hospital and they had said that it wasn't myself or my husband, that it was the baby that had the extra chromosome, so I knew that as well, so that was an extra bit of information.
And I was offered that as well, the genetic counselling, so we took that up, we did that. But I went for the scan, the nuchal scan, which was obviously, absolutely terrified. And I remember you do look at people and they're all excited and that, and you just, you think, 'Oh, if', you know, you don't feel the same. You don't, I was absolutely petrified, absolutely petrified. And I asked for my husband to come in this time and they said, 'Yes' so he came in as well.
And they, first of all she said that she wouldn't be able to do the nuchal scan because the baby was too small, and I worked myself into a state and cried and she said, 'No, okay, I'll try it'. She obviously saw that I was very distressed, so she tried and she got the measurement, and we went outside. She said, 'I'll work it out for you, but it looks good, it looks okay'.
So we went outside and she told me that the measurement was 1 point something centimetres, and that the risk was extremely low, even taking into account that it's happened before and my age. And at that point I remember thinking, 'I don't want anything else. I don't want the CVS. I don't need it'.
So I'd completely changed my mind, which was strange, but I was offered it, I had a consultant's appointment straight after the scan and he went through everything if I wanted to that I could have done. I could have the CVS done, I could wait till 16 weeks and have the amniocentesis. They went through everything with me.
The risk of miscarriage from invasive testing when they had already lost one baby seemed too great when their screening risk was low.
Last reviewed June 2014.