Interview AN09

Age at interview: 29

Brief Outline:

Routine screening in two pregnancies - declined screening for Down's syndrome. Family history of hydrocephalus led to early prenatal counselling but no risk identified.

Background:

Children: One aged 20 months, pregnant with second baby, Occupation: Mother - GP, Father (aged 45 at interview) - company director, Marital status: Married.

She was referred to a prenatal diagnosis clinic because of anxiety about a family history of stillbirth and hydrocephalus. A scan at 13 weeks was reassuring.

So my mother's story didn't quite add up somehow. She, it just wasn't clear what had been wrong with the baby. She knew that the baby had had hydrocephalus, but she didn't know what sort. And so I said this to my GP and my GP said, "Well I'm just sending you straight to prenatal diagnosis." 

So we went there, and they said, "Well let's say this baby's got some form of hydrocephalus  - do you know if it had any other neural tube defects?" So I had to say "No, I don't know." And they said, "Well do you know if it was a boy or a girl?" I said, "I know it was a boy." And the only inheritable form of hydrocephalus, the only sort of genetically disposed form that can be passed on that would, could possibly have affected me only affects boys, because it's X-linked. 

So she said, "Well, in that case probably we ought to try and find out what it was." So they tried to get my mum's old medical records out of [specialist hospital] in London, which turned out to be a complete wild goose chase, and they initially said that they were in the bit of the building that had burned down so we couldn't have them and then they said 'oh no, they'd got that wrong, they were on microfiche' but they couldn't read that.

So it took about two months to get a print-out of these records. And of course by this time the pregnancy was ploughing on, and so they decided to just do a scan at something like twelve or thirteen weeks, I think just to rule out anencephaly - although that didn't fit with hydrocephalus so I don't know how that - but anyway, because we didn't have the information the doctor just said, "Look, let's just do a scan at thirteen weeks." 

Because what we didn't obviously want to do was find out something late. And of course that was completely normal. And then when we eventually got the notes about a month later, it turned out that it was all completely nothing that could've ever conceivably affected my mother's children, that the baby had actually had a kind of tumour in its brain, and that the hydrocephalus was all secondary to that, and that actually advice about folic acid was entirely irrelevant and wrong.  

So it all turned out to be nothing that could affect me. But it was quite a traumatic experience, almost not so much for me but for my mother, having to kind of re-live it again. And she never saw her old notes or anything like that, but she was made to think about it in a detail that she probably had chosen not to for years and years and years. And I didn't read the old notes either, but the consultant who did said they made pretty awful reading.
 

She did not want to know if her baby had Down's syndrome but wanted to know about neural tube problems because of her family history.

I mean I think that's something that people think about very differently. From my point of view, I knew that I wouldn't, if I knew I was having a baby with Down's syndrome I would not have a termination and given that, why know? 

Now for some people they'd still want to know, they'd still want the information, but to get that information you have to have an amnio, and an amnio carries, you know, on a good day a one percent risk of miscarriage and I don't think I'd take that risk.  

So given that I wouldn't actually know, the only information I'd have would be a high risk, and what is the point in that, you know? Even a risk of one in ten, actually the overwhelming probability is you're not going to be affected by it so why, so I just decided I didn't want the information at all. And maybe if I'd been much older I would've felt diff-, you know, maybe if the baseline risk had been much higher, you know, if I'd been thirty, thirty nine not twenty nine would I have differently about that, if I felt the risk was high? 

I think I probably wouldn't have, because I would still feel the same about having a baby with Down's syndrome but I felt that I was quite clear about how I wouldn't follow the steps through and therefore there was no point in knowing the risk information. Because that's what it is you know, it's a risk. It doesn't give you any answers, and I wouldn't have taken the next step I felt to get more answers. 

Whereas for other things, certainly my husband felt diff-, you know. If, when we were, with the first, you know, in my first pregnancy when we were talking right at the beg-, you know, was there a big risk of a serious neural tube defect, and his attitude was, 'What, well what does that mean?' And, you know, ultimately the very worst thing it means is anencephaly. 

Well, the answer is I would've had a termination, that's not compatible with, you know, I wouldn't have carried on with the pregnancy with a baby that, you know, was never, ever going to live any time at all. So that was a very clear decision in the other direction.
 

She and her husband had different views about how they would cope with a child with physical or learning disabilities.

The things we discussed were spina bifida and Down's, and I think from my point of view I feel like my tolerance of having a disabled child is probably higher than average. You know, I think I would have to be convinced that a child was going to have a pretty ghastly quality of life to have a termination.

Were there any influences, do you think there were any influences on your particularly, like have you had friends with babies with particular conditions or...?

I haven't, when I was younger I did nursing work with sort of teenagers with very profound learning difficulties and epilepsy and cerebral palsy, and maybe that has had an influence in the sense that I felt that a lot of those teenagers did have a quality of life. 

And certainly I've done, I mean, I've run camping holidays for children with severe learning difficulties, including children with Down's syndrome, and in fact, you know, so I think I've been in touch with, you know, with children with disabilities. 

I know my husband feels probably irrationally different about the possibility of quite severe learning difficulties from quite physical disability, and if anything is less keen on the idea of, you know, choosing to have a child with a very severe physical disability because I think he, for himself he values the ability to do what he wants physically extremely highly, and he can't really imagine that not being a huge issue for an idividual.

Whereas I can easily imagine it not being a huge, especially if you've never had it. Whereas for him if, say, someone said to him "Look, quite frankly I can say to you this child will never walk," that for him would raise a serious question. Whereas for me it wouldn't raise the same serious question.
 

It is time-consuming for health professionals to inform people fully, especially about all the conditions being screened for.

Do you think, and it's maybe difficult to answer in a personal capacity because you never got as far as discussing Down's, say, but maybe from a professional capacity, do you think people are given enough information about what life would be like living with a condition to help them make decisions?

No, I think they're probably given very little at all. But, you know, I don't, you'd have, you'd be talking about a different ball game, you know, for, as, now speaking as a professional. You know, when I see a woman who comes along and says, you know, 'I've had a positive pregnancy test', they've usually arrived in a ten minute appointment, and I usually tell them to book another appointment pretty swiftly so that there's more time. 

But if you were really going to sit down and talk to somebody about, you know, what the, you know, the really broad and global implications of what's behind, you know, different screening tests, you know, you're talking about a couple of hours, you know, explaining to somebody what it would be like living with a child with Down's syndrome. 

I mean, you know, that's a big job, because Down's syndrome is not one thing as well - it's a spectrum of disability and you couldn't conceivably tell them.

No.

You know, what, where on that, there's just too many, you know. So, I wonder whether that would really help people make decisions as well, because you'd just be raising more questions than, many, many more questions than you answered, probably.  

Yes. 

So I wonder how much...

Yes it just often seems to happen so quickly for people.

How much information, you know, would, is actually helpful. I mean, I think people need to know, they do need to know what the tests are they've having done, and why they're having them done, and what it means. 

And if someone says to you, "Well, I don't know what Down's syndrome is," then you need, you have to explain. But I think, and, probably it's assumed by most health professionals they say, "Well, do you want any tests to find out a risk of Down's syndrome?" and if somebody says yes or no or 'I don't know, I want to know more'. But if they say yes or no I don't think that's pushed.
 

Her first 20-week scan was professional but brief. The second time she had a specialist midwife who made it a happy experience.

Did you feel you were being adequately informed during it?

Yes I think so. The anomaly scan was done by the senior consultant in the scanning department, and as a result was extremely quick. And I know him, and know he's the, you know, the most qualified person to do that, you know, that scan, so in that sense I was very happy.  

But in the actual experience of the scan was not particularly good because it was just a, you know, he could do it so fast, technically he's so good that he'd been down the check list inside two minutes and after that was just doing things that interested him.  

And there was, you know, yeah, he said, you know, "This is your baby's face." And we wanted to know the sex, and he was a bit flippant about that, and I said, "No I really do want to know, go back and have a proper look." And of course he did, but it was all just all over very quickly and we didn't really see much.  

Whereas this time I've just had my anomaly scan, and it was a completely different experience because I was in the normal run-of-the-mill clinic and the scan, I think I was, we were very lucky, we had the scan done by a specialist midwife. And I didn't even know there were any midwives who did scanning, but apparently there are two.  

And she's obviously made a conscious decision that it is a psychological experience for the parents, and given that it is, why not make it a nice one? She has the patter and, you know, it was lovely, we saw everything. We had it all explained in detail, and it was great.