Interview 15

Age at interview: 36

Brief Outline:

Her 1st pregnancy' Triple test at 16 weeks indicated baby was at high risk of having Edwards' syndrome. Amniocentesis confirmed Edwards' syndrome. Pregnancy ended by induction at 19 weeks. She and her husband agreed to post mortem. She has since had another two babies.

Background:

Pregnancy ended in 1999. No of children at interview' 2 + [1]. Ages of other children' 4, 1. Occupations' Mother - Engineering procurement buyer. Father - Project manager. Marital status' married. Ethnic background' White British [Scottish].

She describes having an amnio and says that the procedure went well and that she experienced...

What was the amnio like, can you describe that for me?

It was absolutely fine. It didn't hurt at all. It was just they put some gel on you - well they scan you first of all to see where the baby is and because they don't want to touch the baby obviously, with the needle - and they're looking for a bit of the amniotic fluid that they can get into without touching the baby.  

So they just scan you and put some gel on your tummy, like antiseptic sort of, antiseptic, what's the word I'm looking for? Anaesthetic gel, and put a needle in. It wasn't sore at all, I mean, I thought, it was like 'Oh, this horse needle going in', but it really wasn't sore at all, not for me anyway.  

And you, and they tell you about all these different rates that people have for amnios because it is, I think, up to, for up to a month afterwards you have to sort of be careful, and you might lose the pregnancy through that. So that's another, that's another thing you have to think about, that was another consideration.    

We were going for an amnio and the threat of a miscarriage after that is very real as well but I think what swung it for us was that we were dealing with a life-threatening condition. I mean, if it had been something like Down's of spina bifida or these other ones that are along a spectrum, I don't know what we would have done. But it was the fact that we were dealing with something that the baby was going die, we took the risk of having the amnio but it wasn't sore, wasn't sore at all.  

She wanted to end the pregnancy rather than let her baby go to term because she didn't want him...

Yeah, I never thought about just letting nature take its course. I don't know, for 2 reasons, really I suppose I didn't want the baby to suffer any more than it had to and there's all sorts of research now on when babies feel pain. At that time it wasn't thought to be before 20 weeks or 22 weeks or something, and I didn't want the baby being born, maybe at 34 weeks and struggling for life for a couple of hours or days or something in the special care unit and they weren't going to live. To me that's putting the baby through more pain than was necessary. 

She and her husband saw the baby's post mortem in a positive light as a contribution to medical...

I think it was something we'd talked about before we even knew the result actually, or maybe in the intervening 2 hours before, when we had the result saying that the baby did have trisomy 18 and after that, 2 hours later we had the appointment with the consultant and I'm sure we discussed it then. 

And my husband has a science background so, I mean, he's very much for it and, and I do too. I mean, I don't have a science background but I kind of think in these rare conditions that the only way people are ever going to find out more about them is if, when they come along, they've got some material to, to research. No, it's not a nice thought and there's been all this stuff in the press about the babies being used for post-mortems without their parents consent. But in our case we saw it as a positive. I mean, she was dead, nothing was going to change that so we saw it as an opportunity for something positive to come out of it research-wise. 

So, I think, because I think we actually said at the at that meeting with the consultant before I began the termination, that we'd like, if there was any research, valuable research, to be gained then we wouldn't mind a post-mortem being done. I think, I'm pretty sure they must have checked that after the birth as well though, but I can't remember. 

Describes feeling in limbo afterwards and says that it had helped her to get away from home for a...

Yes, my milk did come in about 4 days later, or 5 days later, if I remember. That was really sore and I wasn't really prepared for how painful that would be but I mean I just took some paracetemol. It didn't last long but it was, it was like tight band round your chest. And I mean that brings it back, because you don't have a real, your body still thinks you've got this baby, kind of thing. So that was another strange thing. 

But yeah, I suppose, we were a bit, a bit sort of aimless in the next few days after, we did odd things that we never do, like going to see show-homes and stuff, I don't know. [laughs] I know, we never, ever do, I mean we don't like new houses. We did some really odd things. 

I suppose you're just trying to get on with life 'as normal' in inverted commas, and I don't know if it's diversion or, but yeah, I mean you definitely, we went away for a few days, went up to one of the Scottish islands and just went somewhere we'd never been just, I think, just getting away from home. I mean, you can't escape it, it, obviously, goes in your head with you but just new things and a journey, a boat, you know, things, just getting away. Because, obviously, the phone was ringing the whole time with friends and family and people popping round and yeah, it was, it was really nice to get away. 

Her husband could see she was suffering and found it difficult not being able to do anything to...

I think he, I think it's just probably really hard for him because he could see that I was pain and there was absolutely nothing he could do. And, you know, there is the traditional man, the 'provider man', the hunter-type thing, and that is an instinctive thing I think, to probably care for their wife, especially if they're in pain. 

And I do, I think he felt really helpless, and I don't remember anyone being overly sort of... wondering how he was and everything, which is, I mean, it was, I do remember him laughing, half-laughing, coming back and saying, 'Everyone, everyone was asking how you were,' and there was, there was nothing like, I'm sure they did ask he, how he was, but the focus is very much on the Mum, which is not, but it's only half of it. Okay, or maybe 2/3rds of it because we have to go through the physical bit but, you know, they're not, they play a huge part in it as well.