Interview AN19

Age at interview: 37

Brief Outline: Normal first pregnancy, routine screening experiences, including combined nuchal scan and blood test.

Background: Children' First pregnancy, Occupation' Mother - research scientist (trained as doctor), Father - software engineer, Marital status' Married.

She knew scans were not just for parents to see their baby, and felt doctors had a responsibility...

I think at the end it's just that, because if they don't explain you exactly what is it for, and the statistical analysis involved and the whole thing, then basically you just enjoy the picture in the screen, and you ask for your photographs, because of course you have to ask for the photo of your baby and send it to your family over there and, and that's about it. 

That's what I did - and I don't have an excuse because I am supposed to know what is it all about. But yeah, once they told me it was fine, then I just enjoyed the whole happy experience. But that is not the point of the scan. That is not the point. The point of the scan is not to know the sex of your baby. That's not the point, so, but basically that's what people go for. You know, 'I want to know if it's a girl or boy and I want to have some nice pictures of it'.

But then, it is because people have not explained exactly what the whole purpose of the scan is, yeah? So, the users, the people who receive the test, they see it in that way, while the other side, the medical side, is using it for another purpose. But then there is a bit of a, a division there. And I think it should come from the medical side, because that's where the knowledge is, to explain to the other side the whole idea of this. Because it is not done to just make people enjoy a nice picture of your baby.

She and her husband agreed they would have chosen to end the pregnancy if the baby had Down's...

Did you feel the same regardless of what the condition would have been, or did you have in your minds there were some conditions maybe you would have gone ahead with the pregnancy?

I don't think so. I mean, what could it be? For example, Down's syndrome? No. I have seen people, I know people who had Down's children, and I think, you know, they decided to have them and it was a good thing for them, in a way, because a Down's child is not really, you know, absolutely hopeless or anything like that. 

They are actually very good company, very loving children, and basically they keep on being children all their lives, in a way, although I don't have a close experience of how to deal with them. But for me I don't think I would have, you know, wanted to do that. 

I think there are too many children around that need care and it's very hard for everybody to have a disabled child, or with a problem. I would have gone for a termination, definitely, you know. I know there are cases in which you are told that there is a problem with the child, and then they go on in the pregnancy and the child is normal. But I think I wouldn't have taken the risk, and knowing that I was fertile helped because then you could have a second chance anyway.

It's, you know, decisions you have to make in life, and each individual has their own mind and makes their own decision, so for me it was very clear. And I really am grateful that, you know, everything went fine. And I wouldn't have, it would have been quite hard, I'm sure, to have, to make a decision like that, but yes, I think we both agreed that it, we would have gone for a termination.

A friend who had a child with Down's syndrome worried about what would happen to the child when...

And you said, I think you said, you'd had friends who you'd seen?

Yeah, I know of a case, back in my country, a lady who had three normal children, grown-ups almost, and then she had this latest child who was born with Down's. I think in those times there wasn't much sort of antenatal diagnosis available there. 

And she fortunately had the means and, you know, the help around to bring up the child very well. But then it was sad at the end, because when the child was about 15 or 18 years old - the girl - her mother, well, they got divorced with her father, so that was hard for the child. And then the mother got a brain tumour. So it was a very sad case, because then she was very, very, very worried about leaving her youngest child. The others were all married, grown ups, there was no problem with that. 

But to leave a child like that alone - even the father after divorcing had died - so that was going to be, I mean, to die knowing that you were leaving a, you know, very, a needy child alone, though there was some family, but still. So those are things that I wouldn't want to have to choose in my life, especially if you have children later in your life.

I was going to say, whether that had actually influenced your thinking...

Yes, because I do think about those things. Even if you have normal children and perfectly all right, if you have them later in life, you do have higher chances to die when they are still, when they still need you. So that is for me one consideration, a strong consideration to make, because I believe when you have, decide to have a child and you have one, you do have to, you know, take a lot of responsibility about that and many other issues. So yes, for me, that is very important, yeah.

Looking back she felt more explanation of the purpose of the 20-week anomaly scan would have been...

And at the second scan when they are looking for anomalies, as the name suggests, did you feel that you'd got a clear enough picture from them about what anomalies they were looking for?

Well I realised later that, perhaps I didn't ask, but yes, they didn't tell me what they were looking for. When I got the leaflet, because they give you the report to put in your file, then I read it, and then I saw that they check all the different things that they look at, so skull, organs, heart, etc. etc. 

Although, during the scan she did say, 'Look, this is the heart, and there are the four chambers, and we are looking at the blood flow'. OK, so I understood they were looking at any anomalies in the heart, but it's not that she went through the whole thing saying, 'Well, now we look at gastro-intestinal anomalies, or bone things'. 

I suppose in a way they don't waste time giving you a lesson in, I suppose many people will not understand what is being said. But yes there was not much information about exactly what was going on during the scan. I just lay down there and I let her do the scan. 

And it was only when I read the report - which is actually not very informative either, because it only says, you know, all the different things they look at, and there is a check, which apparently means normal, I hope. And that was it. And, well, they do say something like 'Anomalies detected - yes or no',  and it said, 'No'.

What do you think most women expect when they go for that twenty week scan?

I couldn't say. I haven't asked around. Well, basically because it is called an anomaly scan, well, I thought it was, 'OK, they will let me know if anything is wrong with the baby.' I suppose, you know, if it's a baby with four legs or two heads or something like that it will show. 

But the other problem is you're not really told what are the, how accurate is this test. You know, because everything is all risks and statistics, and we all know about stories of, 'They told me it was going to be like that, and it turned out exactly the opposite.' You know, 'It was going to be bad, and it turned out to be good', or the other way round. And that is something I think they haven't really explained to people. 

So they tell you, 'You have your anomaly scan. Come, have it and that's it - it's normal, or it's abnormal.' But what does that really mean? Because the fact that they told me it's normal, doesn't mean that it is normal 100%. I could still get there the day of the labour and have a baby with some problem. 

So they don't explain you that. And I know, I suppose they are concepts that are a bit difficult to grasp, perhaps, because they imply statistical analysis and things like that, but it can always be made easier to understand for everybody. 

So people would have a better idea of what to expect or what not to expect from these tests, because I suppose some people might think this is the ultimate test you can have, and if they tell you it's fine then you don't have to worry any more, or if they tell you there is something apparently wrong, then it's the end of the world. And so yes, that is a bit of an issue, I believe.

Staff had informed her clearly about screening options but she knew other women who had been less...

And you obviously got good information from the GP?

Yes.

About the very early screening?

Indeed. I found that I only realised that it was very good information when I checked, you know, with other pregnant women in my yoga class, and then they said that they hadn't received anything, or that the people were supposed to give them the information, didn't know anything about it and I was very surprised. 

Not only because I myself had a good input, but also because, you know, as a, as a person involved in health issues and these areas, you should expect that anybody working in that area should know. That is their duty to know and inform everybody else. I believe in health one of the most important things is education. You, even if you are not really very good at treating something, at least if you can teach people and educate them on health issues and prevention, that is a lot. 

And I was really astonished when they said that their midwives or their GPs didn't know anything about antenatal diagnosis, or at least they wouldn't tell them. I was aghast and I suppose if that is true, at least at such a level, then somebody should do something about it. 

Because I suppose I am a minority. I mean, not many people are really more confident on what they know or where they find, where to find information. Most people need to be told what is available in order to make an informed decision. And then if the people you expect to know that, should provide that information, don't give it, something is going wrong. So that I was surprised to hear and I hope that it's not very extended, I hope so.

They were impressed by the professionalism of staff carrying out their nuchal scan and felt well...

The people who performed the scans were obviously very professional and experienced. We asked questions and they answered everything we wanted to know. There was no interruptions or problems.

The experience was excellent, very straightforward, we had a good feeling afterwards, we felt very reassured with the whole thing, so it's not that I have doubts that, oh, they were, you know, perhaps they didn't know what they were doing.

She felt it was important for health staff to imagine themselves in the patient's place and...

We do tend to get so involved with what we are doing because there is so much to do, that you forget about the person, the person you are attending. And so, you know, the specialist in eyes says, 'This is an eye' and he doesn't see the rest of the person, and that's for all the specialities. 

I think it's very, very, very important for everybody who works in health care, whatever you do, to always remember that you have a person there, and that, you know,  the fact that you know a bit more in that particular area doesn't make you superior or better to that other person. 

And you yourself one day will be in that person's place, because one day you will be a patient, one way or another. So I think we should always keep in mind that, and try to, before putting all the science in practice and all the knowledge, put the humanity, yeah? 

And that's what I try to do in everything I do, because I think it's very important to, you know, show some warmth, human feeling to others - and it usually works. So, especially, you know, in the pregnancy experience, which is something so human, so common, so everyday, and which should be always an issue of happiness, and, you know, expectations and optimism. 

Yes, healthcare professionals can do a lot just by, you know - I think they do it great here, I am not criticising. I think from what I have seen, people are really great. Nurses and midwives and doctors, they usually are very good. 

It is just that sometimes, perhaps for over work, overload of work, or problems of limitations of funds, or whatever, they tend to, you know, be a bit stressed and forget a bit that, you know, that's not only one patient in front of the long queue but a person. So it would be nice to remind them a bit and to make that experience even better.

She was well informed about the availability of the combined nuchal scan and blood test, but her...

My experience was very good, my GP immediately gave me all the information necessary to get, for the primark test, the blood test associated with a scan. I didn't know about it because I wasn't sure exactly what was available. I knew about the amniocentesis and all that, but I suspected that there must be other options. 

So I was quite happy to hear that there was this very early test that can tell you about Down's syndrome and other common problems. So immediately I, you know, applied for that. I called myself. There was a bit of a delay, because this was in summer, early summer - very hot weather. And they send you the tubes to get the blood sample taken. 

So I got the blood sample, sent it in the post, and it apparently didn't get there, or it took three days or something to get there, and they told me, 'Sorry, but this sample is not useful any more, it is too hot'. So I had about one or two days limit to send the sample right in the time when it had to be tested, because it's a very short period when you have to do this test. 

So, but anyway, it got there. We were travelling to my country, to Ecuador, in the few days after that, so I had the scan, I think, just the first or second day of my thirteenth week, which was just about when it had to be taken, because we were leaving two days later. 

So by the time we left I knew the results from the blood test, but not, I knew the results from the scan, which was quite good, they told me that the risks were much lower than expected for my age, but I didn't know the results from the blood test because it was not ready yet. 

But when we came back we received the news that, together, the two tests together gave a risk of one in fifty thousand, so that was kind of, you know, fantastic, because then basically there was no need to go for any further tests.