Interview AN25

Age at interview: 32

Brief Outline: Two normal pregnancies. Nuchal scan not available locally, so had blood screening. Unable to have 20-week scan in first pregnancy because of staff shortages.

Background: Children' 1 (age 17 months), Marital status' Married.

She was optimistic that screening would be reassuring and give helpful information.

Had you got in your mind what you might do in response to various diagnoses or problems?

I think I was very much in a mindset - and it was conscious - of feeling, you know, the chances of anything being wrong to the extent where, you know, we may consider a termination were very, very slim in my own mind. 

And I suppose that was possibly and not, you know, it's not particularly sound reasoning but just based on long sort of histories of very good health and low risk factors for, you know, on paper for, for everything, and neither of us ever having been ill really, in any meaningful way. 

And I know that that sounds ridiculous, in the sense that people who do encounter problems often say, 'I can't believe it's happening to me'. I know that, at a rational level, but emotionally inside myself I just felt that the sort of chances were very low of any problems.  

And so I wasn't avoiding the possibility, but I suppose I take the view on most things in life of, 'Let's not worry about things before they happen' really. A fairly optimistic outlook and positive thinking, and all that we could do at that point in time was decide what information we wanted, on which to make decisions.

They did not discuss in advance what they would do with the results of screening, and were...

Had you and your partner already had discussions about what screening you would like or what your attitude was to screening before that point?

Not in specific terms, in that we weren't fully aware of the different screening options available. The obvious screening is the actual physical scan, and we knew about that, and we'd talked about the fact that we wanted to have that. But we had sort of talked in general terms - just around the decision to have a child, really - in terms of, you know, why we were having a baby and what it meant I suppose to us, and the fact that we knew in making that decision that there were some things which you can't control and that to some extent Nature takes its course.

And that I think, you know, we were very conscious that we didn't assume we were going to get pregnant in the first place, for instance. We were sort of, we tried to manage on the basis of fairly low expectations, because I think we just, we both very much believe that it's not a human right to have a child and that it's a responsibility that we both took very seriously. And I suppose that sort of affects our feelings about choices that you might make along the way in terms of bringing a child into the world.

Did you actually get as far as having an explicit discussion with each other about whether or not you'd ever consider termination?

I don't recall any explicit discussion about that, in terms of one of us saying to the other, 'What would you want to do if we found out that the child had X?' I don't think we went through and sort of categorised between ourselves what would lead us to consider that and what would not be a consideration.

So the conversations we had never got that far. But I think that the fact that we were having conversations about different stages of screening and we knew that the implications of the different stages in terms of what we found out from them, there was almost an implicit sort of understanding between ourselves that that wasn't an option and that, as we do with most things, we would take things one step at a time and make a decision on the basis of the information we had at any one stage.

She would want to be prepared for having a baby with Down's syndrome, having seen a friend's...

I have a very close friend whose brother has Down's syndrome and when we were growing up as children he was sort of a presence in our lives, so I had some understanding of in his case, a fairly severe case of Down's syndrome. 

And also my mum had talked to me about her experience watching my friend's mother give birth to that child with Down's syndrome with no idea that that was going to be the outcome at the time, because that would have been back in the 70s. So I had that as a fairly sort of real experience.

How do you think that affected your thinking about screening?

I think it made me want to try and know as much as I could before the baby was born. I think what I had understood from my friend's life story and particularly the effect on her parents was that there was the shock of it happening with no idea and no anticipation, and having to come to terms with that at the same time as being new parents, and possibly, and not really getting any support. And so I think it was possibly that factor that was uppermost in my mind around the desire to want to inform myself about the screening options.

Her midwife's discussion of screening and possible consequences was excellent.

My midwife was excellent in the way that she presented the information and she, I think, I felt that she respected my ability to make my own decisions very much, and the way that she presented it was not in bald terms as you've outlined. 

The meaning was clear, in terms of, you know, she did ask me about, you know, my feelings around the implications of finding out any results and I think she also asked me, I'm fairly sure she asked me whether we had discussed it as a couple or not. 

And I remember in the notes she recorded that she had discussed the screening options with me and that I was fully aware of all the implications and the avenues after that. And I was sort of, I was quite interested that she put that as a sort of conversation that we'd had. But I didn't feel at any stage that there was any value-based judgements being made by her.

The 12-week scan was a wonderful experience for them, but the staff seemed to treat it as very...

How did that go? Did you both go?

Yes, we both went. It was very, very straightforward, you know, and a fantastic experience. And we actually managed to just, to see a really good image on the screen, which looked like a baby! albeit absolutely tiny.

And it, I think that we did feel, it was very quick. That was sort of one thing that I think we hadn't quite expected how quickly it was done. And we realised that we were just one of thousands, whereas, you know, when you're actually experiencing it you're the only people in the world who are looking at a fetus on the screen of your baby. 

But I think that was something I remember from it. It was very matter-of-fact from their point of view, but it was incredibly significant for us. But there was a sense of sort of relief when it was there. I suppose for me personally to see this baby was just confirmation that it was there, given I hadn't really had any symptoms, and there was no denying its existence and it was actual visual proof that there was a child there.

What about your husband's feelings?

Yeah, very similar I think. Yeah, he very much enjoyed it and was excited and, you know, we got a print-off of the scan and got copies for the grandparents and that sort of thing.

Did the person doing the scan communicate much with you during it?

No she didn't. I mean I'm often sort of curious to know who these people are and what, you know, whether this is all they do all day every day or whether it's a broader part of their, part of a broader job and things and she didn't actually seem particularly interested in engaging in conversation. It did feel very much of, 'Yes, you're the next on my list of people to scan'.  

I did note that there were sort of no introductions, for instance she didn't sort of say, 'I'm . . .' and give her name. There was not very much rapport building, I didn't feel. 

I didn't particularly feel I needed that personally, but it did cross my mind at the time that had I been feeling more anxious than I was, or perhaps if I'd been on my own, it didn't feel the most comforting of environments.

The 20-week scan was reassuring but not as exciting as she expected, and the pictures were unclear.

It, for me personally it wasn't as momentous as perhaps I would have expected, given the fact that it was the first time I'd had it and the fact that you can see so much more. I think hearing from the person doing the scan that everything was fine was of course reassuring, but the actual experience of seeing the baby at a more developed stage wasn't as exciting as I thought it would be because I couldn't get a full idea of what was going on on the screen.  

To me it seemed really indistinct, lots of bubbles all over the place and the odd body part floating in and out of view, but how they were all connected together was very, it was totally obscure. And that, and we were relying on the ultrasonographer to interpret to a large extent the images and saying, 'That's a foot' or, 'Can you see the spine?'  

And if I was being totally honest, I couldn't really. I mean there were some parts that I did see but it wasn't like seeing your whole baby on the screen or, I mean we saw its mouth open at one point which was, you know, quite entertaining but . . .

 Did you get a picture? Did you come away with that?

No, we didn't because there was you know, it wouldn't have meant anything. There was no one image that we could have said, 'Take a picture of that, it'll show us our baby'. I'd heard from friends that it was just an amazing experience to see, you know, a really fully formed baby on screen and so I suppose I was expecting a certain sort of completeness to the image and that didn't happen for me.  

And also the ultrasonographer had trouble getting the baby into the right position to actually get, to actually do the sort of diagnostic tests that he needed to do on the spine. He just, the baby was in the wrong position and it got to the point where they were saying, 'Oh, you know, we can't actually see what we need to see for this final category of check and you'll, perhaps the best thing is for you to come back again another day when the baby's in a different position.'  

And I must say I had, I wasn't particularly keen to take that option up. And fortunately the baby ended up co-operating and moving at the last minute so they could do it, but they seemed to have trouble generally getting the right presentation on the screen. Which was the same actually with the first scan with this pregnancy. So I don't know if it's something about the way the baby's positioned at the moment.

She was informed about an extra blood screening test, but surprised the midwife would visit her if the results showed an increased chance that something was wrong.

The blood test was, the option was a double test for Down's syndrome risk and spina bifida, and it was explained to me that the results would be presented in the shape of a ratio for Down's syndrome and just in a pure sort of high or low, or normal or high outcome for spina bifida. That's what my understanding was.

So they didn't give you a 1 in 389 kind of ratio?

Not for the spina bifida. The ratio, I was expecting a ratio for Down's syndrome, yeah. And I think she explained quite carefully that I would get a letter telling me whether the result, what the outline result was and I could then phone up to find the specific ratio on the Down's syndrome but that it wouldn't be in the letter itself.  

And that if there was any, I remember her saying, “We'll come knocking at your door if there's any cause for concern”. And I found that quite surprising. She meant they would physically come round and contact me in person face to face if there was any very high risk shown. 

Because I found that quite an interesting way of midwives spending their time chasing round trying to find a woman who in my case, you know, might be at the other end of the country with work.

Her blood test results were reassuringly low risk, but she knew this could not guarantee Down's...

And did it come out low on the blood test?

Well, I mean, obviously I didn't know what the overall range was. For Down's syndrome with my first child it was 1 in 1800, and from what I'd read the risk being high was viewed to be within 1 in 250 or lower, so in that respect I felt that it was quite a way off. 

It's only sort of since my second pregnancy where the ratio was very low, 1 in 3800 or something, that I realised that it can actually go that low, and that 1 in 1500 compared with 1 in 3800 is quite a bit different.

Can you get your head round these figures?

No, not really. I mean, I think that it was from, it was pure sort of curiosity that I wanted to know.

Because these risk figures are kind of, you're given nothing much to compare against, are you?

No. Well, only the 1 in 250.

Yeah.

I suppose that was my baseline, how near to 250 is my result? And 1800 is a long way away in terms of the way it's scaled, I suppose. So in terms of sort of statistical information, I could make a rational interpretation, I suppose, of the information that was being given to me. And I realised that that still is only a chance sort of estimate, it's not absolute. 

But it was sort of a high enough ratio, or is it a low enough ratio? A high enough ratio to reassure me that the chances of the child being born with Down's syndrome, given the reliability of the tests, was generally not very likely, but I always knew that till the baby was born you wouldn't actually know.