Interview 09
More about me...
She explains why the decision was much harder to make than she had expected.
She explains why the decision was much harder to make than she had expected.
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.
Her immediate reaction on finding out she needed to go through labour was not to end the pregnancy.
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 knew it was the right decision.
She still finds it hard to accept the decision she made to end her baby's life even though she knew it was the right decision.
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.
The photos of her baby were vitally important to her in the early days.
Describes how she hadn't wanted to leave the hospital because she knew she wouldn't see her baby again but that her partner eventually insisted.
Describes how she hadn't wanted to leave the hospital because she knew she wouldn't see her baby again but that her partner eventually insisted.
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.
She wanted her baby to have a post mortem to help find a cure for hypoplastic left heart syndrome.
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 was determined to have more children and was very pleased when she became pregnant.
She was determined to have more children and was very pleased when she became pregnant.
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.