Antenatal Screening

It's really difficult because I think, I know - I mean, I have a friend who has just declined, although she's got a heart baby, she's declined to have a heart scan because she's basically said - it's taken her a long time to get pregnant this time - and she's basically said, 'Well, even if it's got a heart problem I'm not going to terminate.'

So I mean, that's obviously a hard decision to make. And I think it depends on what you want to get out of it. I mean if you go in with the thought in your head that, 'Well, if there are any problems then we will terminate anyway', then it's the right decision for you. But even with us not knowing what we would do it gives you the choice. I think it's a good thing because it does put you in a good position where you've got the choice. 

And although you say, you might say one thing before you have it - 'Oh yeah, well, if there was a problem I'd definitely terminate' - you don't know how you would react until you're in that position, when they actually say to you, 'Your child's got a heart problem', or some sort of defect, 'but it's not going to, it's not going to affect them' - it might be a cleft palate or whatever 'but it's not going to affect them very badly.' Or they might say to you, 'Well, your child's got a problem that is going to mean it's going to have a terrible life.' And then it gives you the choice, I think. And I agree that everyone should have the choice.

I've spoken to other parents who felt that the termination thing was pushed on them maybe a little bit too much. I don't feel that ourselves. It was offered as an option, but that's all it was. So I think I'm probably quite glad of that, because you're in such turmoil when they tell you, you don't know what to think. All you can think is, 'Oh my God, I've got a child who's got a problem and who may not live. He might have a terrible life.' And I think it would be quite easy to make the wrong decision, if you're not informed enough.
 

No, no. I couldn't have gone through it at that, at eight months pregnant. As I say, if I would have found out sooner, then it might have been different, but not at eight months, no, no. And I wouldn't have seen it as like a stillbirth anyway. I just think it's torture to put any woman through that - to even think of putting them through that, to be honest. 

They just give you maximum half an hour to think whether you want to terminate your pregnancy or not at eight months, and then you have to give birth to the baby in twenty-four hours time, and then you're sent home on your way. I think it's, I just think it's evil, to be honest.

You said he [the consultant] wasn't very sympathetic?

No, he wasn't very sympathetic at all, he was, he just basically, he told me a bit of jargon and I asked him to tell me in English. And he basically said that, 'She only has half a brain and the other half is a cyst which is putting pressure on the other half of the brain, which means that it could stop her oxygen supply to her brain which then', he said, 'that will make her even more severely handicapped', if she pulled through it. And he just said, you know, 'My recommendation is that you have a termination', and that was it.

You didn't talk to anybody else. Were you offered anybody else to talk to for counselling?

No, no, nothing at all. Not at that stage, no. I suppose I would have been offered counselling if I'd decided to go through with the termination. But that was all we were offered was a termination, and he came back and I said, 'No' again.
 

I missed out, I mean I should have mentioned to you that one of the things we talked about on the Friday, the day of the diagnosis, was, I made myself ask a sort of, you know, 'Okay, if I decide to go ahead with the termination, how does it happen? Because I need to know, you know, if I'm going to consider it. I don't think I want to do it but, you know, please tell me how it happens.' And I still can't talk about it now without getting really emotional about it.

Do you want to stop for a bit?

Ooh, gosh, it takes you by surprise sometimes. No I don't mind, it's all right. It takes me by surprise because of the strength of feeling remembering that day, it was such a traumatic day. Oh God, yeah, sorry. 

I asked one of the, I don't what, I don't know exactly what she was, I'm not quite sure what her position was, quite a senior person anyway, in the fetal medicine unit. And she was the one who was talking to me, very, very nice. 

They were all, they were all very nice people. I mean very, they all had very good manners, I mean, when they were giving these, this bad news. But she said, 'Okay, well, what would happen would be, you know, we would inject, put, you know, inject something into the baby's heart and it would stop. I said, 'Well, would that happen quite quickly, you know?' And she said, 'Yes, yes, it'd be very quick.'  

I said, well, that was actually a horrific idea to me, that's why I find it very upsetting still to talk about it. And she said 'The alternative would be palliative care; that you would give birth to the baby but then we wouldn't operate and he would naturally die.' 

So I said, 'Okay, well, how would that happen exactly?' And she said, 'Well, you know, the labour would be induced or you'd go into natural labour. You'd give birth on the labour ward with all the other mothers, you know, were perhaps having healthy babies and keeping their baby and then, you know, then we wouldn't intervene, and he would probably die and we'd try and keep him as comfortable as possible until he died.'  

And all these things were such awful prospects, you know. When you're pregnant you just want to nurture this child you're carrying and all your instincts are so, you know, protective, and all these things they're telling you, like 'Right, you can offer your child up like a lamb to the slaughter, I'm going to stick a needle in his heart and stop it, you know, or you can give birth and then watch him die or, you know.' All of them were just so horrendous, you know. 

And I made myself, that weekend, think about them, think, 'Yeah, but how do you weigh that up, how do you weigh up that horrible experience, you know, for the child against longer term suffering or, you know, quality of life or the fear the child might have of knowing that they've got a serious condition that might kill them?' 

And I really was trying to weigh that all up at the time, and that's what we didn't really have support with, to be honest. The actual medical side of things was great, I couldn't fault it. But how, as a, you know, as a human being you make those sorts of decisions, you know, 'Do I stick a needle in my baby's heart and kill him now? Do I give birth to him and then sort of hope that he doesn't die, have a heart attack and drop dead at the age of 5, you know? Or, if he survives it all, which is the best you hope for, how will he live with the burden of this knowledge of this terrible uncurable thing?  

Is it going to scare the life

Well, ultimately I probably wanted to discuss it more than my husband did, and I think he's very much the kind of person 'Let's make a decision, let's talk about it when we have all the information', whereas I need to start making that decision early on, I need to have all bases covered. 

So we had talked about it in detail, on my instigation I guess, and there were really two scenarios, I suppose, there were - well, three. There was, you know, the fact that the baby might be absolutely fine, in which case obviously we would progress; the fact that the baby might just have something wrong with his heart, in which case we'd pretty much made up our mind that we were going to go ahead, because heart surgery would - I don't think at that point we knew what it would involve - but we knew that it would be surmountable, and it seemed so far away, and we so desperately wanted a baby that it didn't really matter and - 'it didn't really matter', that sounds really dismissive - but, you know, it seemed like a problem we could overcome. 

And because of my age and because of our 2 previous miscarriages, when we discussed it, I sort of said to my husband, 'This could be our last chance to have a baby so I don't want to' - you know, a heart problem - yes, it's an awful thing but it's not the end of the world, and it can be overcome. So that was where we were with that. And then obviously the third and final scenario was that there was some chromosome problem as well, which was very common with this particular heart defect. 

And again within that sort of remit there were various problems. It had been explained to us, you know, it might be that the baby had Down's, or it might be that they had a very serious chromosome problem, which was quite common again with this heart complaint, where the baby would either die before birth, but if it survived the birth itself it would be very badly handicapped and would probably die very soon after birth anyway. 

So I think at that point we talked about that scenario and decided that actually we wouldn't be able to go through that, because it's not just us that's affected. It would be awful for us to go through that. You know, having to go through the nine months of pregnancy knowing your baby probably wouldn't survive would be very hard and very stressful, and actually to some degree in our minds pointless, which sounds selfish, but you've got to think about the other people you are putting through that as well. You know, young children in the family, sisters, brothers, parents, friends. 

And that it isn't just about you as a couple - it is about so many more people and how they react towards you, and how they, how comfortable or how uncomfortable they feel in talking to you about it.

Did you find that you pretty much agreed on your responses to the different scenarios?

We did, except for the scenario that actually was the scenario that eventually, you know, came to be, and that was where the baby had a heart condition. And I wouldn't say, we didn't disagree, but I was absolutely adamant that I wanted to go ahead with the pregnancy, because I did strongly feel that I may not get another chance to have a baby. 

My husband was a little bit more, he wasn't reluctant, but he was a little bit more concerned, he wanted to think it through in more detail, and he wanted to have more information from the doctors. And I think that's perfectly acceptable, you know. He wanted to be armed with all the facts. I just thought, 'This is a chance to have a baby, I want a baby. The baby may be ill, but there's a good chan

Mother' And we had to go back to the hospital I think on the Monday after that weekend, and tell them whether we wanted the amnio. I think by the Saturday morning I rang the GP in floods of tears. I couldn't stop being sick, I couldn't stop crying. You know, "Give me some pills, calm me down, I can't cope." 

And he just said to me "Look, you've told me Down syndrome isn't a problem for you, you've told me that the heart surgery has a ninety five percent success rate. What's your problem? Enjoy your pregnancy." And I think that's really what I needed to get on with the pregnancy. I was already so attached to him, and to be throwing up, and actually physically vomiting at the thought of not having my baby, that should've been enough to tell me that that's not an option for us.

How about you, [father]? I mean, these few days when you were having these discussions and thinking the unthinkable in a way - what went through your head?

Father' I don't know, really. It sort of, I was more on the, I think a termination - although we thought about it for a little bit, deep down I thought we were just never going to have one anyway, so I didn't know what all the major fuss was about really. I know it sounds stupid but...

Well, maybe it just means that for you [mother] it suddenly loomed as a possible choice whereas for you [father] perhaps it never really did.

Father'  Yeah, I just think that [wife] likes to talk about everything anyway and sort of discuss things through, but...

Mother' I'm a girl!

Father'  I just thought that we'd never go down that road anyway - and if we did then obviously we would've done, but we didn't, so...

Would anything have made you reconsider that, going down that road?

Father'  I suppose once we were told about the heart and the implications of the surgery, the percentage rates and everything else, if it had come back as really low and if I thought we'd been sort of like keeping him just for our sakes rather than for his best health, then we probably may have chosen a different path.

Mother' I can remember we were talking about as well, okay, if he was inoperable but also if he was unable to give or receive love, I don't think that I could've carried on with a pregnancy with a baby that just wouldn't understand love.
 

Father' Unfortunately there are no certainties in it because --

Mother' There was no certainties, you know. Nobody knew how long he would live, whether I would make full term, you know, at 20 weeks they said, 'Oh, you know, if you make 24 weeks, you know, you'll be classed as a stillborn baby'. And I made 24 weeks and it was very much of a thing where every week I was counting, that that was another week further ahead.

Father' That's right. Every day really that we got through, I mean, we would sort of go to bed of an evening and we'd turn to each other and say, 'That's another, we're another day closer'.

Mother' It was, you know, it was very much, you know, because we didn't know how long he would stay there for, and obviously the longer he stayed there the better chances he'd have had.

Father' Yeah. And there are a lot of, I mean, there are children who survive two, three, four, five, six years with trisomy 13. The quality of life question is quite a big one. People, you know, we've had people come to us and say, 'Oh, yes, but what quality of life is he going to have?'

Mother' He'd have had his own world.

Father' I think if that's, you know, if that's the life that you've got, then that is of quality, to us.

Mother' We would have done everything --

Father' Yeah.

Mother'  -- to have made his life and stimulated him despite all his problems.

Father' The whole thing, really from - I mean, we spoke about this, we went over to the local specialist centre, where we were sort of, they performed the amniocentesis, and the whole thing about it has been giving him absolutely the best chance that we could. 

It's also for our sake. You know, we were given our diagnosis in September and the baby was due around Christmas time. Now with the two older boys as well, we sat and we thought and we talked about this, and it's, 'Well, you know, is it going to be fair on the boys? Is, are they always going to associate Christmas with losing their brother or having a very profoundly disabled brother? How are we going to cope over the next four months?'  

And very, very early on we made a decision, or we formed the opinion that the decision we made wasn't what was best for the next four months. It wasn't what was best for the next four years. It wasn't what was best for, to an extent, what was going to be best for our two older boys. 

We knew that we were going to have to look ourselves in the eye in ten, twenty, thirty, forty years' time and be able to say to each other, 'We gave our son the absolute best chance that we could'. And that's really why I don't think we'd do anything differently. It's been hard. It's been - I knew at the start of this, I mean, I went off and read up and looked on the internet and all the various websites. 

We knew very, very early on after diagnosis that there wasn't going to be a happy ending here. What there could be was a slightly less bad ending. We had to try to salvage something from what was a very, very bad situation.