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Though she made contact with the Cystic Fibrosis Research Trust she and her husband found it more useful talking to a friend who was a paediatrician.
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We also gathered very quickly, we got in touch with an organisation called the Cystic Fibrosis Research Trust, I'm not sure what it's called, I think it's called that now. And they put us in touch with other parents who had children with cystic fibrosis, which felt very strange talking to somebody who, with a child who had it when we were at the point of a decision of, the option of not to continue with the pregnancy. Because the actual gene for cystic fibrosis and the ability to test it had only been available for a couple of years, so these people we were talking to this had not been an option, they did not know that their children had cystic fibrosis until they were born.
So I think we had, just had to put that on one side and try and find out all the information that we could. We are fortunate in that we have a friend who was a, a consultant paediatrician who had a lot of understanding of what it was and so was able to explain it to us. But we were fast realising it, and it actually was said to us later that medics will say one thing to somebody who was expecting a baby with it, about what it means, but would say very different things to somebody who was born with, had a baby who was born with it. And I think what we realised at this point though was that if we'd found out at birth that the baby, we would have got on with it, we would, you know, obviously we wouldn't have been, it would have just become part of our lives and this child's life and... But we had the, we had, were faced with a choice. |
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She knew nothing about ending a pregnancy and said she felt too frightened to ask questions about whether the baby would be born alive.
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Because you just don't hear about, I think you hear about it more and more but I'd never actually heard of 'termination for fetal abnormality'. I didn't know whether you could do it, I didn't know whether you, what the time limits were or, or anything like that. And I think things that we were frightened about you can't even articulate. I mean to me the horror was that the baby would be born alive - and nobody actually explained at what point, you know, the baby, you know, the ba-, would die, or is there any way of making sure that the baby had died before, you know, the termination started. I don't know, and in some ways it's so horrible you can't, you, you can't even ask the questions. I don't know how there's any ways of addressing that.
A number of people have said to me, “Did you really have to go through a normal delivery?” Well, nobody's actually said why we didn't, but I mean clearly, you know, surgery for a C-section is, is pretty major, especially when you've had it since and really appreciate that. But I think that could have been made clearer. |
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Explains how difficult she had found it when an acquaintance approached her in an insensitive way soon after she got home from hospital.
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I think one that just springs to mind was coming out of hospital and a neighbour ringing up and said, “You had a...” - this was after the termination - “Oh, you had a car seat for that baby, didn't you? I know somebody who needs one. Could they have it?” And this was about, I don't know, the day after I came out of hospital. And I swallowed hard and just said, “I don't think so” [laughs]. And she had no idea, I do know she had no idea that it was an insensitive comment, just no idea, just wasn't thinking. And I thought, 'Oh well, that's her problem,' and I thought, 'Why should I make it worse for her?' |
