Interview 04- Antenatal Screening

Age at interview: 41

Brief Outline:

Hypoplastic left heart diagnosed after scan and amniocentesis at 25 weeks in second pregnancy. Decided to continue with the pregnancy. Son is now 2.

Background:

Children' 2 (ages 4 and 2), Occupation' Mother - teacher, Father - accountant, Marital status' Living with partner.

For more clips from this interview click here.

 

 

She describes the day she discussed whether to continue or end the pregnancy as 'traumatic' and felt the burden of responsibility when making a decision.

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 out of him, you know? And is the trauma that I'm perhaps choosing to put him through fair on him?” You know, and that's what you have to go away on your own and weigh up. 

And I remember sort of going round in circles in my head between these things, you know. “I couldn't possibly do that, I couldn't choose to terminate at 26 weeks”, or, you know, “but I couldn't choose to give birth to him and then let him die”, you know. And thinking, what am I going to choose, you know? Which of these three just awful, very different, you know, scenarios is the one that I feel I could live with, or that I could choose him to have to live with?

And that was the really difficult thing about it. The medical side of things was great, to be honest, their manner and the sense of care, and the attention we got, and the facilities. We came away thinking, “Wow, you know, we're in a really good place”. But how you actually grapple with your decision, I think, I don't know what could have helped, but we were lucky we had the charity. 

But everyone there that we got in contact with through the charity, of course had made the decision to go ahead, so we knew that when we were going up to the AGM that weekend, that we were going to be dealing with people who, you know, perhaps, they were all very decent people, they didn't put pressure on us, but there was unspoken sort of understanding that their opinion was that we should go ahead; they had.

And that no-one sort of said, oh you know, “Don't. How could you possibly consider a termination?” But there was something sort of about the whole situation that it would have been very hard to go back from it and say, “Well, actually we have decided to terminate anyway.”