Antenatal Screening

Yes, from my point of view, my feeling about screening is that it's pointless. Because I think if somebody wants to know if their child is carrying something that can be tested for, then they should have CVS or amnio. They should be tested, and they will know one way or the other. 

Screening, I think, either gives people false fears, or it gives them false hope that everything will be all right. And people are aware of this, but I don't think people think it through, that even if you have tests, and your child does not have Down's syndrome or spina bifida, it doesn't stop your child from being autistic, it doesn't stop your child from having some kind of brain damage. 

It, there are so many things that - and some, a lot of them are a lot more serious, potentially, and life-threatening, than Down's syndrome, which is not life-threatening. It's just a condition, it's just an alternative way of life, if you like. But you can't test for those. I think the problem is that we've got our - society's now about choice, isn't it? You can choose this, you can choose that. Everything's all about choice, like it's a big shopping spree, and there's some things that you can't choose. 

But because we are inundated with this idea of choice, we feel now, I think people feel now, that you can choose to have a perfect baby, but you can't. And it's very, very hard to - and because that is the kind of, the society that we live in, then when you don't have the perfect baby I think it makes it even harder. Whereas probably forty or fifty years ago, it was - I mean, it wasn't handled well then, either, but there wasn't this expectation that everything would be fine, because we've had this test and that test. 

But I certainly would feel, with the screening - so that's nuchal fold and the scans - that they're not diagnostic, and therefore, as I know myself, just because you have a low risk, a one in two thousand or a one in five thousand risk it doesn't mean you're not going to be that one person. And in that case statistics are, they're pointless. They have no meaning, because if you are that one person it doesn't matter. It doesn't matter.
 

I don't know if you're planning any more?

No, I don't think we are, and I think one of the reasons is that I don't particularly want to have to make any decisions, which is awful, really, isn't it? And because I know I'm more at risk, and it's a hard thing, because you think, 'Well, I know I'm more at risk', and if you were to have another child you would want another child partly to help my eldest child to have somebody to talk to about her when we're gone. 

Because he will automatically have to take - I'm not saying he'll have to care for her, because I don't think he will - but he will have to have some kind of involvement in her life, for as long as she lives, and you think, 'Oh, well, another child might help.' But, so then, if you're saying that, what you're saying is, 'I don't want another child with a problem.' 

But then, of course, you think, 'Well, I'm more likely to have another child with Down's syndrome now, statistically, so what would I do? Would I have tests? And if I had tests, would I have a termination? If I've just said, 'Well, I don't want another child with a disability, because I want somebody who can help him.' And if I have a termination, what am I saying about the child that I've got?' 

And I suppose, in a way, I just find it easier to think, 'Right, well, let's just not go there.' Which might be a bit of a cowardly thing to do, but I think as well, I think I would find it nearly impossible to go through a termination, for a child which I know would be a delightful child, who would lead a very fulfilling life, and would be very happy in themselves. But it's a very big issue, very big issue. 

And I don't, I would always, I really, I would always, always support somebody who chose to have a termination. I think it's - and I think if they feel it's the right thing for them, they absolutely, that's absolutely right. 

But at the same time I think that if somebody feels that they can't - even if - it's very hard because I think there's a lot of pressure on people to do one thing or the other, by various people, and I think it's almost an impossible choice to make. I don't know how -  and I mean, I'm saying that, and I've got knowledge of, of having a child with a disability, which is not, it's not - especially Down's syndrome is - the media make it out to be - and that's what everybody thinks about, when you're tested for things, 'Oh, Down's syndrome', and spina bifida, I suppose.

But to, probably people are - I don't know - but my perception certainly of how I felt was people are less frightened of spina bifida, because it tends to be more of a physical disability. And again, I think a lot of people are - this mental disability is a, it's a big fear with people. 

Because people see pictures of people with Down's syndrome who've been institutionalised, because that's what used to happen to them, who are in their forties and fifties, who shuffle along, looking down at the floor, don't really communicate, and people don't realise it's the institutionalism that's done that to them, and not the fact that they've got Down's syndrome.
 

Yeah, I think at the moment people are not given a balanced picture. That's my experience from people I know who have had tests recently. I think the, as you say, the assumption is that they will want to have a termination, and for many people that may be true, but my personal concern is that people are not given enough information. 

And by that, I think it's fair that a consultant should say, if you have, 'Your baby has Down's syndrome or whatever, and these are the things that may or may not happen to them.' 

The problem I have with that is that when you have a normal baby the consultant doesn't say to you when it's born, 'You have got a normal baby. When they're two they might get meningitis and have brain damage. They might be run over in a car acc-, you know, they might become pregnant as teenagers and then become a drug addict.' 

People do not say this to you, and these things are all traumatic and awful things to happen to anybody, but nobody sits you down, when your baby is normal [gestures inverted commas], and says these things to you, which are just as likely to happen. 

But I think it's fair to outline that there are some extra health risks with having a child with Down's syndrome, and that the heart problem is, it's the major one now. I think - and there's the risk, a slightly higher risk of childhood leukaemias. Certainly the infection side of things I don't think is such an issue now. I don't think as many children are dying through infections now, because of antibiotics and improvements in medical care, I think.

The problem is, I suppose, it'd be quite, it's quite difficult to get a balanced picture, because, if somebody asked me, who'd had a test, because I know what information they probably will have got from the consultant, I would probably be more positive about it, because I feel I'd have to balance - do you understand what I mean? I have to balance that view, whereas I suppose what you really want is you really, it would be really nice if you could find somebody who could just tell it like it is, you know - the negatives and the positives. 

And you might think as a parent who, you know, that you were able to do that, but I think you've got a lot of, you're carrying a lot of baggage with you, as a parent, and there is a certain amount of, you know, 'I want to make my, people feel that my daughter's life is worthwhile, and, you know, I really love her' and everything. So I think there is, there would be an element to that in it, and I think that's difficult, and I don't see, I can't see a way round that.
 

If I was told she had hydrocephalus and there was a lot of support out there, if I was pregnant and they told me she had hydrocephalus, and I knew what I know now of how Lily was getting on, I wouldn't have chose to terminate, no way. Because she is doing so well. 

If I'd have been told she had hydrocephalus, if I would have been told what they told me after she was born while I was pregnant, I might have thought about a termination. Because there wasn't enough information given to me to give me the choice, you know to see long-term how children with hydrocephalus can lead an ordinary life and be as normal as the next child, but I was given such a dim picture that I would probably have terminated.

It's not a lot about the condition, and you're given so much negativity, you're never - that's exactly why I've chose to do this, so that other mums hopefully will look on it and think, you know, 'Look how well she's doing, you know. Why should I terminate this baby because they've got hydrocephalus?' You know, it's not the end of the world, at all, in fact I've been blessed, I really have.
 

How do you feel now about screening and what it offered you?

It's a really difficult one, because if Lily was born normally then I'd say it's great, you know, you have two scans. So it's like picking holes after it's happened. But if Lily was picked up, she should have definitely been picked up during them scans, they should have know something was wrong, and it wasn't. 

I wasn't at, I don't believe I was at any higher risk because of my age or weight, or whether the fact that I smoke, or anything like that is a higher factor for having a child with special needs, I don't know, but I definitely think it should have been picked up.

Did anybody ever talk to you about what might have caused it?

No. She had an intracerebral haemorrhage, which is a bleed in the brain and that's as far as we got. They said to me, it could be that her blood don't clot - but clot, blood clots were found in the brain so that's obviously not the reason. And then obviously you get the guilt. 'It was me when I reached up for that saucepan.' 'It was me when I fell over.' 'What have I done? I must have done something terrible for this to happen to me.' Because you look at it as a negative. 

You don't look at it and think, 'Well, I've done that and I've been rewarded with this child', like I do now. Then I was thinking, 'I must have done something really awful for this to happen.' And yeah, you do. But it's just like grieving. You go though stages of blaming yourself, blaming everybody else. I mean, I was really angry with the hospital, and now I just think, you know, 'Look what I've got that's come out of it.' It's a grieving process, and you just have to go through each stage, you know, as best you can, and for ever how long it takes. But now I'm, you know, I'm happy now.
 

So you still think screening is good? You would have - I mean, would you have liked to have known before that she was going to be born this way?

I don't know. I think had they have picked it up on the early scan and said, 'There's problems - we're going to deliver', now I would be thankful, but I don't know if I would have been at the time. You know, they say it prepares you, but it can only prepare you so much can't it. I believe it can only prepare you so much, until you've actually got it in your arms. Nothing can prepare you for that. 

I definitely, I think screening is a good idea, but I think there should be more of it. Not just at 13 weeks and 20 weeks. Anything can happen between 20 and 40 weeks.

Thinking particularly about scans?

Yeah. I mean, your last scan's normally at about 26 weeks or 20 weeks and then you're not scanned again, unless there are problems, you know, until you've got the baby, and that's a long time to go.

Although even, in your case, you did have more scans?

I did, yes and they still never picked it up.

Do you think people are given enough information about the fact that scans don't always pick things up?

No, I think scans are all positive, you only get positive information about scans, you know. Normally pregnant women, well, especially in my case, you don't look, 'I hope the baby's going to be all right'. You go in and think, 'I wonder what sex it's going to be?' That's what you look at a scan as, not, you know, to see if there's any trouble. 

But no, I don't think you're given enough information. And while they're doing the scan, I don't think you're told enough. You know, she's prodding around and you're looking at the baby on the screen, and they'll normally point out the head and the hands, and I don't think you're told enough. There's not enough information about it. 

And there's definitely not enough, it's too long ago, too long a time span between 20 weeks and 40 weeks, where things could go wrong. And perhaps if they did pick them up, you know, it'd give the mums a choice of termination or to keep the baby. And, you know, or even just a bit of reassurance that everything is OK, between the 20 and 40 weeks, because anything could happen. So I definitely think you should have more scans.
 

Mother' Yeah. I'll be honest, he had a pop at me. He said, you know, 'Who the hell done your 20-week scan?'

Father' Yeah.

Mother' And I'm, like, 'Oooh, you know'. And he's like, 'Well, it's not this hospital, is it?' and I said, 'No, no'. I said, like, 'The hospital that I had her'. And then he said, 'Oh, I knew it wasn't this hospital. Why wasn't this picked up?' 

Father' He was so annoyed.

Mother' And I'm, like, 'Oh', and I said, you know.

Father' He said, 'It's so obvious.' 

Mother' Yeah. 

Father' 'This is so obvious, this should have been picked up'. And we're like, 'Well, we didn't know.'

Mother' And I said, 'I didn't know.'

Father' 'We just did a normal baby scan, we just' we never knew'. And he said, 'This is so obvious, it should have been picked up'.

Mother' That it should have been picked up. Because this is it.

Father' And then that put the guilt on us, maybe we should have seen it. That was bad enough.

Mother' Yeah. But then that's what I said, 'What caused this?' I said, 'Did stress cause this?'

Father' And 'Did this cause this', because at the time we weren't together.

Mother'  'Did smoking cause this?' because I'll be honest, yeah, I smoked during my pregnancy. But he said, 'No'. They did the'

Father' 'It's not stress, it's not smoking, it's not anything like that, this just happens.'

Mother' 'It's one of, just one of those things.'

Father' 'This happens'.
 

Mother' Yeah it's just, to be honest, if I could I would like to go back to get the video, and the pictures and the information, take it up to [specialist] Hospital, and say like to the doctor up there, 'You tell me, or show me, in their exam where her problems are.'

Father' Yeah, scan photographs, everything.

Mother' If they say they couldn't, then fair enough, the woman had done her job. But if they pointed it out, then I'd go doo-lally, because I should have known. I should have known.

Father' Yeah, first scan, first thing. 

Mother' But...

Father' I've still got, I've still got her scan, her scan photograph...

Mother' Yeah, we've still got pictures.

Father' In my wallet, I carry it around every day. 

Mother' But it's...

Father' And it was at that, it was in that scan photograph that I've got, 'This is your normal baby, this is, she looks fine, there's no problem here, yeah, this is this, this is that.'

Mother' But this is it, you know. At her first Christmas, as far as we were concerned she was fine, she was...

Father' Fine.

Mother' She was normal. And to be told that she might not make it to the next Christmas...

Father' Yeah, Christ.

Mother' Is devastating, you know.

Father' Yeah.
 

So looking back now, and thinking about being told everything was normal, and going for the scan antenatally and it was all fine, how do you think you would have reacted then if you'd been told that?

Mother' I would have been devastated, absolutely devastated. I'm, I think back now and I am so glad I didn't know. I think I wouldn't even have wanted to know. It's, that's only looking back now. You know, thinking about the labour, labour could have killed her, but it didn't, you know. It was so fast it didn't. And if I'd have known she'd have been born that quick, I would have chose not to know. I didn't, I wouldn't want to know. 

To be honest, if you take me back in time, not knowing what I know now, I would want to know if there's something wrong with my baby, so you can plan, you can get the advice, you know. The baby would have been born by caesarean. You can plan everything. But with what I know now, how things have developed, I'm glad I didn't know, because, this is it, I enjoyed my pregnancy, I did. 

You know, I went on holiday with my family and my children, we had a fantastic time. And I had, you know, not really any major worries. You have your normal worries, you know - who's going to look after your kids when I have to go into labour? But, that's it, you know, I enjoyed it, everything was fine, she was born fine, she was born a good colour. I don't know what I would have done, I really don't. 

To be honest, I think the pressure I would have been under, you know, being a single parent with two other children, carrying a child with some major heart problems, I think the pressure would have been on me to have an abortion, would have been big. 'How are you going to cope? What are you going to do? You've got two other children to think about. Who's going to look after them when you go into hospital?' The pressure would have been overwhelming. And, you know, it's, I would have been in tears every day, every night.

Father' And the pressure from me for keeping her.

Mother' Yeah.

Father' There's no way I would have wanted to, sort of...

You wouldn't have considered it?

Father' No. Not at all.

Mother' What? Considered what?

Father' Abortion.

Mother' You wouldn't have done?

Father' No, not at all. Like I said to you, she was meant to be born, she was supposed to be here.

Mother' But, if - no, if you think about it sensibly and the situation that I was in, I was a single parent with, with two children. I'll be honest, you know, I do have a supportive family. But to go through that - and I'll be honest, my heart goes out to every parent who has found out when they're pregnant, because what they must be going through must be horrendous - not knowing. That's the thing, the not knowing. 

Father' Yeah.

Mother' You know, are they going to be born OK? Are they going to be alive? When's their first operation? You know, I must admit, I