Interview 20

Age at interview: 43

Brief Outline: She has had two children (1st and 5th pregnancies), 2 miscarriages and 1 stillbirth. She has ended 2 pregnancies. 2nd pregnancy' anomalies detected at dating scan, so she was scanned regularly. By 18 weeks multiple abnormalities evident- sent for amniocentesis. Pregnancy ended by induction. Post mortem identified multiple pterygium syndrome - a genetic disorder caused by both parents having recessive gene. 4th pregnancy' IVF treatment, scanned at 10 weeks and anomalies detected- sent for amniocentesis. Pregnancy ended at 17 weeks. Amnio identified Down's syndrome.

Background: Pregnancies ended in 1996 and 1999. No. of children at time of interview' 2. Ages of children' 8, 2. Occupations' Mother - mother, formerly civil servant, Father - economist. Marital status' married. Ethnic background' White British.

She has never worried about amnios because she has always been cared for by experienced staff in...

And I have every test under the sun. I had, I've had the three amnios, and I would always have an amnio again because once you've had them, all the things you read in books about how they're great big needles and about how potentially dangerous they are, I didn't worry about that in our local hospital, which is a very good teaching hospital, a very big hospital because I know how skilled they are, how many they do a year, they do a great number. And I think a lot of the statistics are based on smaller hospitals where the staff have less experience, and that's where the possible problems can occur. But I'm not particularly prone to miscarriage because even with these babies that were in a real state I never miscarried, I never even bled with any of them. So I've always gone for amnio. 

She has ended 3 pregnancies because of a genetic disorder and feels people should be more...

And it is possible that babies that look quite ill can turn out to be, to have reasonable lives. But I think you need to examine your own resources, and think, you know, 'If the baby was disabled, how would we as a family cope? You know, how would we be able to manage that?' 

Because, you know, friends that I do know, who have had disabled children, it has had a huge effect on their lives, and on their marriages too, I have to say, very often. I know of many unfortunate cases of women, you know, their husbands have just had enough. And I think, you know, it's a lifelong commitment - very often a disabled child. You know, some people are really happy to make that, but I've always been very clear in my mind that I just wouldn't. I just, you know, I just couldn't make a commitment, a promise that we would as a family be able to cope with that. And then you're left with the, you know, the stress of putting them in a home whenever you want to go on holiday or do any, you know, it's just all too awful really. 

So I was lucky that I never had any real doubts about that side of it.  Even in spite of, you know, being relatively religious in some areas I just, I just thought, you know, those priests aren't going to be washing and turning this baby, you know, five times a night for the next 20 years, are they, you know.'  

You've got to be realistic about what you can do and also sadly what services are on offer. Because a lot of people have been very optimistic initially about what social services and educational services are on offer, and then the endless legal battles to try and get proper help for these children are just so draining emotionally, financially and everything. 
 

Explains why she didn't want to see photographs of her baby though she was willing for...

It was expressed as an option, but it was expressed several times, and I wish they'd just asked once and then dropped it. But at several points it kept being raised, you know, 'Would you like us to do this? Would you like us to do that?' I mean I understand there are different stages in the procedure, and they did say, 'Would you like us to take a photograph and put it in the notes?' which I agreed because I never have to look at the notes. But I mean it was so tiny, it was only about that big anyway [demonstrates size of baby on camera] And there wasn't much to take a photograph of, because you know, it was all a bit of a mess anyway. And they, luckily when it, when it was born they just took it away.
 

Explains that the baby's post mortem pinpointed her 'dud genes' which made her feel the...

We had the post-mortem results, and although they weren't 100 per cent definite, they said that my husband and I both have a recessive gene, that we're very unlucky to have met up [laughs] because had we married other partners this would be irrelevant. But because 1 in 4 of our babies will inherit two dud genes - one from each of us - they will have, they will be unable to process some kind of enzyme which causes all these problems with development in the womb, and means that the majority of babies with this syndrome, which is lethal multiple pterygium syndrome, die somewhere in pregnancy, usually in the middle trimester. 

So I was quite reassured by that, because the baby would have died very soon after we'd had the termination anyway. So I hadn't terminated a potential baby at all, it never had a chance. So in a way that was reassuring.  

We knew that we had a... three-quarters chance of having a healthy baby each time, and so I thought, 'Well, if we just keep having them, we will get there in the end. And terminate the ones that have this problem early, instead of going through all that long palaver, because if there's the slightest problem on the first scan we'll think, 'This is it, finish here, start the next. And we can have as many babies as we want if we just keep going'.