Interview 09

Age at interview: 33

Brief Outline: Her 2nd pregnancy' 20-week scan found baby had anomalies. Preliminary diagnosis after specialist cardiac scan was that baby had serious heart defects. Pregnancy ended by induction at 24 weeks. Post mortem revealed baby had hypoplastic left heart syndrome and an unbalanced chromosomal translocation (Robertsonian translocation of 13 and 14). Genetic counselling found that mother and her mother are carriers of a chromosomal disorder or translocation of the chromosomes. Since termination she has had another baby.

Background: Pregnancy ended in 1996. No of children 2 + [1]. Ages of other children at interview' 11, 5. Occupations' Mother and Father - employed. Marital status' married. Ethnic background' White British.

'He was a rock'.

And he was very much a rock, a complete rock, and I feel he felt he had to be. All our family, we have no family that live close by, so it wasn't a case that you could just pop in and see your Mum or they could just pop in. But it was very much sort of, he was there but he knew what kind distance to keep and when to sort of stay out the way and let me have a rant and a rave - the usual [smiles].

She explains why the decision was much harder to make than she had expected.

And I think we knew in our hearts of hearts what, what we would do, but it was sort of getting more facts. I wanted to find out more information so I was onto the internet and I was onto the midwife and I was on to the GP and other various people I knew, off down to the library and all this in the space of about 2 hours. 

And then we just decided that looking at the whole situation... I mean, it would mean that I would not be able to work, which I know isn't, it's perhaps a very selfish thing to say, but financially I cannot afford not to work, or I couldn't at the time. The effect it would have had on our other daughter and on the marriage. I mean we were looking at the whole picture. 

And I'd actually got an article out of a nursing magazine that I'd got off my sister about a child that had gone through all the different stages of operations, and I sort of read it and I, and I just knew that there was no way that we could put a child through that kind of suffering or ourselves, you know, for that matter. And so we decided we would go ahead with the termination. 

Can I just ask you, was that a very, was that a difficult decision to make?

It was, it's one of those things that I think, like I said, we'd discussed it that, yeah, that was what we would do, but with actually being faced with that decision was a different ballgame, a completely different ballgame. 

And it was, I don't know, it, it was very surreal, to be perfectly honest. It was like, somebody had put to you a hypothetical situation and said, 'What would you do?' And then given you the real situation and said, 'Right, now act on it.'  

Her immediate reaction on finding out she needed to go through labour was not to end the pregnancy.

The next shock that was to come, was that I'd got to inform my midwife. So I phoned my midwife and this was the bit I hadn't researched, and she said, 'Right, okay, I'll ring the labour ward and book you in.' I said, 'At labour ward?' She said, 'For the procedure,' I said, 'Why do I need to go to the labour ward? Won't I go to the general'?' 'No,' she said, 'You do know what will happen, don't you?' And I said, 'Yes, I'll have a general anaesthetic and it will all be done and ' 'No,' she said, 'You'll have to go through the labour,' which I hadn't comprehended, that hadn't sunk in, although I knew it, I did know this but it hadn't, I hadn't realised it.

So that threw me, I said, 'Right, I'm not doing it.' I said, 'I'm not doing it, I've changed my mind.' My husband said, 'Now, don't be silly but, you know, we've made the decision and we've got to, you know, if that's the way it has to happen, that's the way it has to happen.' And I, I, it just completely threw me, it really did throw me completely. I genuinely did think, at that point that I would go in, have a general anaesthetic, it would be like having a D & C, that kind of termination. It hadn't registered that because I was so far gone, I would have to go through a full labour. 
 

She still finds it hard to accept the decision she made to end her baby's life even though she...

I think it was, what I, what I couldn't and, and to be perfectly honest, quite often now, still can't get to grips with, is the fact that we made the decision to end that life and that was that. 

You know, it was, it was a case of we had made that decision [coughs] to end that pregnancy, and in effect, we know that she wouldn't have survived but we chose to end her life. And that's the bit, I just, I still now struggle to, to deal with. It's very, very, it's a very, again, double-edged sword. You know you did it for all the right reasons but you just, you just can't, sometimes you just can't accept that you did it. 

It's almost sometimes like I'm watching a video of somebody else, it's happened to somebody else, it hasn't happened to me. Very, very strange, sometimes very strange feelings. 
 

The photos of her baby were vitally important to her in the early days.

But they were, I'd say in the early days, like I say, when we left the hospital, we went straight into the local, nearest town where we'd been told to get them developed, and we had them developed straight way, I think it was an hour or 2 hour wait, because there's only one place that will develop them because of the nature of them so, obviously, I suppose, if they go through normal channels, the person who was developing them might feel distressed. So we had them done straight away and that was it - I was straight back home, got me photos, that was it. Right, I'll cut myself back off from the world now. And they were, they were, they were a real lifeline, they really were. And I know that a lot of Mums that have said that they took pictures but they've never had them developed, or they've left them at the hospital for when they're ready, and I just couldn't have done that, that was just my way. I needed them and I needed them there and then, and straight away. And they did come out really well, they came out really well. My sister holds the negatives and I hold the originals, just in case anything should happen to either or the other set, I've always got that back-up.
 

Describes how she hadn't wanted to leave the hospital because she knew she wouldn't see her baby...

That was probably the hardest part. And that, we, I would say we were, we were told we could told about 10 in the morning, and it probably took us 2 hours, or me, 2 hours to say, 'Right, I'm ready to go now.' As soon as, we'd get ready, 'No, I can't go, I need to have just a bit more time.' 

And it was, it was sort of, it was very difficult to leave her because I knew that was it then; that I wouldn't see her again. She was, she was going off to the regional hospital where she'd first been diagnosed, for the post-mortem, and we were told that it would take some weeks, so I knew that there was no way of seeing her when she'd come back. Being so tiny to start with, they'd explained to us that it wouldn't nice to see her when she got back. 

So it was kind of, 'Right, we'll go... just 5 more minutes... just another 5 minutes.' And that's how it went on as I say, for about 2 hours. And actually walking out of the hospital was probably, was horrible. It was like I'd, it, well I had, I'd left part of me behind and, and it was very difficult. It was, we got about half way out the sort of hospital doors and I said, 'I need to go back,' and he said, 'no, we're not going back now, we've done it.' And, and I'm glad he did because I think I would have been backwards and forwards all day because I think, you know, he knew that he needed to tell me that, 'No, we're not going back now, we're going home now,' or you know 'We're going to go and get the photos' or, and that did me a favour, I needed that sort of gentle shove in the right direction, to say, 'No, come on, it's time to go.'

She wanted her baby to have a post mortem to help find a cure for hypoplastic left heart syndrome.

One of the other things that, that I haven't mentioned was when the post-mortem results came back, because, obviously, we gave permission for the post-mortem because I wanted... if, you know, if they can do research and, and either help find a cure or some kind of, you know, way of, other way of dealing with this hypoplastic left heart then that's great. 

It actually turned out that not only had she got the hypoplastic left heart and the problems with the, I think it was the arteries, there were also some cysts on the base of her skull that hadn't been picked up. I suppose because they were so concentrating on the heart once they'd spotted that. And also, we found out she was carrying a chromosome disorder called balanced chromosomal translocation, which, apparently, is an inherited condition. 

So then we were all sent for tests, and it turns out that I carry it. That is nothing to do with the heart condition. However, if you have a pregnancy and you're a carrier, there are four scenarios - miscarriage, a child that's born a carrier but is perfectly normal, like myself, a child that is born with no, does not carry, or a child that has such a severe, profound physical and mental problems, they very rarely survive to term. Those that survive to term will, probably only 1% will go, will survive the labour, and of that 1% only another 1% will make it to the first year. And it's called Patau's syndrome. So that was then thrown up that I was a carrier of this chromosome, so then it was where had I had it from? 

So my parents were tested and my mother's a carrier. So all this has gone on for years with nobody knowing. My sister's not a carrier, thank goodness, and my auntie's not a carrier, and my brother's not a carrier, so there was just me and my Mum. Now, we know for a fact that my maternal grandmother had many, many miscarriages, but she was already deceased by the time we found out so there was nothing she could do about it.  

But they now think that it may be that it was inherited from my maternal grandmother. The complications around this, was the fact that when I get pregnant again, not only have I got the chance of a slight recurrence of a heart condition, we now have to look at the issues surrounding me being a carrier and the life of a child I'd be carrying would be a) would I miscarry or would I have a child with this very severe condition? So that then is a whole new ball game, a whole new ball game.
 

She felt she needed another baby to fill the void in her life left by the baby she had lost but...

So just backtracking, to me basically, completely going to pieces, it was basically around the fact that the only way I could see myself really moving forward with the grieving was to get pregnant again. And I know some people say, 'Oh, you know, you can't replace a child,' I wasn't replacing it, but I needed to fill that void that I'd got. You know I knew I wanted two children. Always had and, you know, what had happened wasn't going to change that longing to have two children. And then to sort of find out that your husband sort of doesn't know whether he wants to go that way was, was absolute sort of shock.