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Antenatal Screening

People's stories

Normal results or declining screening

Interview AN05

Interview AN05

Age at Interview: 33
Background: Children: First pregnancy, Occupation: Lecturer, Marital status: Married.

Brief outline:4 months pregnant. Normal screening results. One scan in early pregnancy, no other scans planned. Alphafetoprotein results not yet received.

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She thought about not having screening, but her husband was in favour of having every test available, for reassurance.
Print And you said earlier that you thought it was unlikely that even if the AFP results came back suggesting there was a raised risk that it would affect your decision? Yeah. So did you think about not having the AFP in that case? I did actually. But then, I think, more - not more for my husband's peace of mind - but, you know, his opinion was that we should be, you know, I should be screened for everything and, you know, if it's part of the routine screening then just, you know, have it done. But I did actually think, you know, as far as I'm aware at this point - I mean, I don't know if something does change that I'll, we'll think differently - but I did think, you know, is there actually any point in having it done?....He's completely non-medical….His father died when he was 8 of a cardiac arrest, so he has been screened for heart disease. So I think that probably has influenced the way that he approaches healthcare himself. That he feels that if it's on offer, you know, you should have it done and that was more the thinking than the actual outcome of what the screening was for. I'm not suggesting that he didn't understand what the screening was for but, you know, “Well, if they do it as routine, then you should have it done.” But I never actually voiced to him that I was thinking about not having it done.

She did not want to worry about something being wrong unless it actually happened.
Print At what point did you start having those discussions together about Down's Syndrome? Pretty early on. I suppose there's a kind of, there's no history in either of our families and although I probably fall into the category of an older mother now, I'm still not nearly as old as, you know, some people who are having their first baby so it's not something, to be honest, that worries me greatly. And maybe that's me just being naïve, I don't know, but you know, I kind of, I'm going on the history of everybody. I don't sort of feel there's any need to stress about it unduly, and we'll sort of deal with it when it happens, you know, if it happens….. And so you talked about whether or not you'd go for a termination. Part of that discussion must also have been, could you live with a Down's Syndrome baby if you had one? Yes. And did you talk about that in much detail? Not in a huge amount of detail. I think, you know, as I said, we're kind of the opinion that we would deal with anything as it comes up. And I think you can spend too much time worrying about things going wrong. And I think particularly, you know, the profession that I'm in, you see so many horrible things that you - not you become immune to them - but I see no point in getting stressed about things until they become a reality. And I know that the percentage chance is still very, very small that, you know, it would be an actual reality, so I'm kind of trusting with that. And we said that if the results of the AFP come back and indicate that I could be in a higher risk group, then, you know, we would deal with that situation as it came. But at no point have we said we couldn't deal with this at all, you know, we would look at termination.

Her pregnancy pack included a sample container for cystic fibrosis screening, but did not explain what it was for.
Print I got a pack sent out. And in the pack there was a universal container, which I presumed, wrongly, was for a urine sample, but it was actually for a saliva sample for cystic fibrosis. But there was nothing in the pack that told you that that was what it was for, so I thought I was being very helpful taking it along with a urine sample in it. To the booking visit? Yeah. And did they then take a saliva sample instead? Yeah. But they actually, the midwife asked us if, you know, we wanted to be tested for cystic fibrosis. And you opted to be? Yeah.

Even though her background meant she was well informed about healthcare, she would have liked more face-to-face discussion of screening.
Print What kind of discussions did you have with the GP at that first visit? This was very soon after the test? Yeah, this was about 7, 8 weeks, and we just discussed the booking-in clinic, and I'd actually taken a urine sample along, so she said that she was going to send that off for testing, but usually, you know, they were quite happy just with the home test. And she gave me, they gave us this 'Ready, Steady, Baby' book which is given out to, which I'm sure is very useful to people who don't have any idea at all. And just how the antenatal care would work, because my GP surgery does shared care, so that I would be having appointments with the GP and the midwife sort of intermittently. And did you have any discussions at that stage about screening? She gave me a lot of stuff to take away, leaflets about screening for Down's and some of the other congenital disorders. To be honest, I think there was a sort of, a perception that because of my background, that I would have quite a lot of knowledge about it. How do you feel about that? To a certain extent I think it's, you know, that is probably true, but on the other hand it's quite nice to actually have somebody go through things with you, because I think there's - particularly the first time - there's things that you probably don't think about at all. Certainly the screening for all the sexually transmitted diseases, although I knew that that happened, you know, that was a bit of a, “Oh God, am I being screened for syphilis and HIV and things?”

Nuchal scans were not available on the NHS locally and she did not feel the need to have one privately.
Print It's not offered in this health area. It's offered in both regions to either side but it's not offered here. So if you'd wanted it you would have had to pay for it? Yeah. And they didn't tell you that it was available if you paid for it? No. They did tell me, the midwife told me at my booking-in clinic that, because we only get one scan unless there's reasons for others, which was at 11 weeks. So she did, she told me that I could actually go and get a private scan done later on if I wanted to…. Did you think about going for it privately? No, actually - well, I mean, I could have. I could have, I'm sure if I'd pushed with my GP I could have been sent to, you know, one of the regions close by, to be honest. But because of the timing of it, you know, I didn't really think any more of it because I'd been, you know, gone for my booking visit and that was when I got all the information about it. So, and I mean I had heard things being mentioned about it, but I hadn't actually looked into it at any great detail so I didn't really think about going privately. Do you wish you'd known about it earlier? Possibly, I don't know. I mean I'm going for my AFP will be done this week. And I think myself and my husband have talked about it, you know, at quite great length and I don't know that it will actually influence our decision of what we would do anyway. So part of me thinks it's good to be screened but I don't know that it would actually make any difference to the decision I made or that we made. I don't think we would actually go down the line of termination.

The 12-week scan helped check for twins and was a moving experience. The sonographer explained everything.
Print Well, one of the major things that I think we were wanting to get out of the scan was to discover that there was only one baby, because my husband is a twin and as far as I was aware, there was no history of twins in my family. But it actually turns out that my father's parents on both sides there had been a history of identical twins, but they had died so we didn't know about it, because they'd died as babies. I actually was kind of thinking, “Oh, well, if it was twins then what you don't know won't hurt you”. And, you know, I've never had a baby before so if I had two then I wouldn't know any different to just having one. My husband, on the other hand, was quite relieved to see there was only one, because he was of the opinion that one would have to be sold because we wouldn't be able to afford two! So he was quite pleased. Did you know about your family history then, before you went for the scan or did it only come up afterwards when somebody said, “Oh, yeah, we've got twins too”? It came up when I found out I was pregnant. Because my husband's a non-identical twin, so we didn't think there was much risk of any sort of genetic thing, but the fact that there was identical twins was kind of a bit of a, “Oh, right, okay, you might have told me that beforehand.” And actually watching the scan, what were your feelings when you were sitting there together? I suppose it was very emotional, actually. It was a lot more emotional than I thought it would be. I mean, I'd heard people saying, “Oh, you know, you're so moved” and I thought, you know, because I've seen it, when people show me scans I've thought, “I can't make that out”, and they say, “There's the baby” and I think, “Oh right, okay.” I mean I could work out the scan of a gall-bladder or something, but I can never, ever work them out. And then, you know, we saw this little thing, which the ultrasound technician couldn't, it was asleep at the time, so she was poking it and trying to get it to move, which it eventually did, poor little thing. So, but yes it was really quite a moving experience. And did the ultra-sonographer talk you through what he or she was doing? Yeah, yeah, she was very good actually…. Was there any point where you felt you weren't being given enough information about what they were looking at or for? No, she was actually very, very good. I mean, I did ask when she was having a look to try and, and she was trying to measure the fetus, and I asked how many there were, because she hadn't actually said, you know, “There's only one”. I think that's the only time I had to actually ask her anything. She was very, very good. Talked us through it.

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