Interview 24

Age at interview: 43

Brief Outline:

Mother of 1 child, she had a miscarriage in 1997. She has a heart condition and takes warfarin (heparin during pregnancy). 3rd pregnancy' 7-week scan confirmed pregnancy viable. 12 week scan no problems found. Nuchal scan at 13 weeks found baby had shortened femur, no tibia or fibular on right leg. Specialist scans confirmed lower limb deficiencies. Pregnancy ended at 17 weeks by induction.

Background:

Pregnancy ended in 2001. No. of children at time of interview' 1 + [1]. Age of other child' 6. Occupations' Mother - mother and NHS facilitator, Father - lawyer. Marital status' married. Ethnic background' White British.

She dreads scans because of her previous experiences.

No well I've already experienced a scan where the baby was dead you know sort of, so I already have an extremely negative approach to scans. I was very fearful at every single scan of my live daughter, but I, at the same time I felt, still emotionally I felt like that was going to be a successful pregnancy for some reason. So I still have an element of optimism [laughs], but I would still approach a scan in a very fearful way.  

So I can talk about it quite 'blah' - I can say 'yeah it was a viability scan', and 'oh there's a heart beat, that's marvellous' - you know it wasn't 'well of course there'll be a heartbeat at all', it was the other way round, so to me that was positive. 

Her GP was very helpful and sympathetic and even though she couldn't offer any solutions she was...

In fact another person I spoke to very soon after the diagnosis, was I phoned my GP, and she said, 'Come and see me, I can't talk about it to you about this over the phone, come and see me now at lunchtime, just come at, come at 12 when my appointments finish'. And so I just went straight to see her and I was there till 1 and she was just marvelous, absolutely fantastic and you know across the road so I just, I felt like I did have a sort of friend in her and yeah she's wonderful. So I mean you know you get kind of dramatic about medical people when they do have a positive influence but yeah she was very helpful.

And she said just sort of helpful things like you know. I think she'd specialised in obstetrics and she was saying you know, 'Life on the obstetric ward is not all happy and pleasant it's horrendous at times as well and,' yeah and she asked me what I felt about abortion and she said, 'You know it might be heart one way and brain the other way,' and it was just, it was just so helpful. So it was almost like a, it was a proper adult conversation with someone who was away from it so they weren't emotionally involved but they were able to empathise and it was just so helpful. So she was brilliant. 

And yes she didn't have any solutions obviously [laughs], she didn't give me advice she just talked and listened and she was, I mean she also explained exactly what the process would be if I did choose to have an abortion, and how that would happen. And no one had really done that, so that was good. I mean ARC (Antenatal Results and Choices) was obviously able to provide that information but I wasn't, I didn't really want it in written form I didn't, wasn't at that point because I hadn't made the choice. But she explained to me what would be, what would happen more or less. That was also part of the, that was more a help, that wasn't part of the decision-making process. 

Describes the factors that led her towards the decision to end the pregnancy (her baby had lower...

This man comes in now, [laughs] finally. And we're in this little room where we've been sitting for about an hour or more than an hour by now and he sort of says, 'Oh I'm terribly sorry.' I think' [laughs], so anyway he was very pleasant when he finally appeared, but I didn't learn anything more from him than I'd already learnt myself by exploring all the obvious places to go. So I didn't really feel like it was, it wasn't really that worthwhile. It was still helpful because it kind of put us through this huge process of trying to get some information. 

And he did answer all my questions, there was a bit more that I learnt. He then dictated this letter to my G, no to the consultant who'd sent me to him in front of me. Now I know that's good practice normally, but for me it was like, 'oh just stop it because I'm desperately late, I really don't want to miss my play I just..'- it's like he's not got any idea that I'm trying to do this other thing it's just, it's awful. 

And I then I think I left, I raced back and I got there in time to see the play so [laughs] fine. But as I kind of in that, in that day I decided not to have the baby - because I don't blame him because it was just that that kind of - it puts it all in to words, that was it, that was what I couldn't cope with, because I knew what it's like to struggle with all this stuff. I knew that I could become the active parent, the kind of very involved person who pushes all the time for what's required. But I just decided I can't, I don't want it, I've got enough pushing on my own behalf. You know I've got a pacemaker, I've got all the drugs that I've got to take, I've, I'm going to get more breathless, I will need another operation in 3 or 4 years, and I choose not to do that. I'm just not going to do it. It's a completely rational decision on my part and that experience with that big hospital just confirmed it for me. 

So it's not their fault, it just confirmed it, because that is my normal experience, it's not an unusual experience. It was just slightly worse than usual. And I just thought 'okay, I've made my decision'. 

She wanted to treat her baby with respect and was glad she decided to see him.

And, as I was saying because for me it was really important the baby was intact and wasn't hurt, which is odd, and I wanted to show respect to the baby... because it was my baby and I felt completely horrendous about it, I didn't want to harm it anymore than it was already being harmed. So yeah that was very important to me.

But, I'm very pleased that I did see the baby, it was very important. And, yeah he was very, very tiny obviously. I don't really have a picture of him in my mind at all, it was just like I saw him, I was very definite that I didn't want photographs, because to me that's just it's, it's the moment of death, I don't want to see him dead baby, I just don't. 

So we, we've seen him and I think also I felt very strongly that we had to have a proper funeral which, which... we hadn't thought we would want. And so, and also then I think we were desperate then to get out of the hospital, absolutely desperate to get out.

She found dealing with her young daughter's questions when she got home was very difficult as...

And finally we went and we came home. And, [swallows] and my mother was there and my daughter and my daughter came running up and she said... [sighs] and she started touching my stomach and asking, talking to the baby again. And so we straightaway took her upstairs and told her that the baby had died and that it had been born too soon and, it was just awful. I can't, I don't know, it was awful. 

And she's, I mean it was, it was good as well because she immediately said, 'Oh when can we have another one?' and you know all the sort of things that a little 3 or 4 year old would say. And, 'Well where is it?' and I thought well that's a really good question. And, 'Can I see it?' and you know, 'Where is it?' and I didn't feel up to explaining coffins I just, so we kind of, you know we, we tried to answer her questions but, anyway we told her straightaway. And I just thought 'oh if only we hadn't told her I was pregnant'. However, so she knows that she's got a dead brother or baby who didn't grow to be a baby properly. 

And, so we talk about that sometimes and that's actually, I'm quite happy that she knows that. And one day we'll explain about the decision we made. But it was just good to get home and at the same time I sort of was very aware that this baby was still in a fridge in the hospital which was pretty bad. And it was, unfortunately it was 18th of December so it was one week before Christmas, there were going to be no cremations at the end of December, they had put them at the end of January. So there was going to be a 6-week wait, plus I had Christmas to face and I was supposed to be going to [place] to see my... we were all going to [place] and it wasn't Christmas you know we hadn't bought any presents, we kind of just said 'We're not doing Christmas this year'.

But we decided we should still go to my parents for Christmas, partly because of my daughter and just you know can't just completely blank everything out. But it was the wrong decision it was just awful, absolutely appalling. 

She found ARC (Antenatal Results and Choices) helped her at several stages particularly in the...

Well I found ARC (Antenatal Results and Choices) really valuable all the way through, but especially during that decision-making period just because I do think it's a really sort of secret, it's like a hidden thing that happens in society that does not ever get talked about. And so ARC kind of gives you a channel, a place to go to where you know there may be other people who are involved in the same thing. And it's only those people who can really understand what it is you're going through.

And you went to meetings and so on?

I went to one meeting with other parents, that was probably a few months after the termination. And I found it was good but I wouldn't want to do it more than once.  I kind of, you need to move on as well you can kind of, I think there's a first 6 months or so when you're just totally immersed in everything that happened to you, and you want to talk about it over and over again and you don't actually get the opportunity to do that very much. So to be able to do that with other parents who went through the same thing was very, very liberating. But after maybe a year you don't need to do that anymore maybe or, I also think it kind of shuts off after a while, you just think "Okay, done that one.' 

Explains that she hasn't been able to conceive again and that she feels blessed to have one child.

I'm sure I'd feel a hell of a lot worse if I didn't have one, but I haven't been able to conceive again after, since then, but in a way that's inevitable I think so that was already there as a possibility I guess, and we're certainly not trying any more, so. that's fine. But you're right to have one child is a complete blessing, I mean it's fantastic. If I didn't have her I think it would mean something much, much worse, I'm not sure, I don't know. 

But it does make me realise how blessed I am to have one child. Kind of, yeah I mean going through the processes is, it isn't all appalling, there is, there are parts of it which, because it changes you, it actually develops your awareness of. I'd say more meaning in terms of what it is to have a child and how grateful you can be for the one that you have got.