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Antenatal Screening

People's stories

Continuing with an affected pregnancy

Interview AN30

Interview AN30

Age at Interview: 28
Background: Children: 1 (age 14 months), Occupation: Mother - full-time mother, Father (age 33 at interview) - painter and decorator, Marital status: Married.

Brief outline:Down's syndrome suspected at nuchal scan. Couple declined amniocentesis and continued with the pregnancy. Further scans suggested heart problems (operated on successfully since baby's birth).

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When they went for the nuchal scan, the sonographer asked why they would want to know about abnormalities if they would not consider a termination.
Print Mother: We were sent a couple of information sheets from the hospital about screening, the twelve week scan, and attached to that was a tick box, two tick boxes that you could say whether you wanted the twelve week scan and whether you wanted to know whether there were any abnormalities in pregnancy. And they explained the nuchal translucency ratios and measurements that they take and basically what they could find out from your scan and what it meant, whether it be Down's syndrome or other problems. So we didn't really know whether to tick the box or not, so I asked my health visitor, "Do many people find out? And what's the point in ticking the box?" Didn't ever think that anything could ever possibly happen to us, didn't really think about ticking the box, but we did. Father: I didn't even think about anything going wrong. I just thought the scan would be a scan and that would be it. Mother: I always considered that we wouldn't be able to have children, for no particular reason, but I never considered when we did get pregnant there'd be any problems. How naïve. So did you sit down with the list in front of you and talk about it or...? Mother: Not really, We ended up just ticking the box because I spoke to the health visitor and she said, "Oh there's no point you might as well be prepared. You might as well find out. It doesn't do any harm." We didn't really think about it, we just ticked the box and then we went, when we went for the scan the first lady that we saw she was very much, "Well, if you wouldn't terminate, if you wouldn't terminate a pregnancy, why have you ticked the box, why do you want to know?" And she was... Father: She was quite impolite. Mother: She was very abrupt, very, as if she wanted to give us a counselling session. Well, we weren't there for counselling. We had ticked the box, we'd made our decision and we didn't really feel that she had the right to question us in the manner that she was doing it. As it turned out I had to go back for another scan because I had too much wind in my tummy. So we went away for a cup of tea and came back and we actually saw another sonographer who was much more down to earth, a lot more friendly. So we had the scan and then we were in the room and she put our age and the measurements from the nuchal translucency into the computer and came out with our ratio. So it should have been 1 in 750, and it came down to 1 in 134. So she went through what our options were as to sort of further testing, whether we wanted an amniocentesis. We made it quite clear that we wouldn't have a termination. We hadn't really spoken to each other about it. Father: Well it was sprung on us really, wasn't it? So we didn't know what to think. Mother: But we seemed quite clear from the outset that we wouldn't have a termination. We hadn't discussed it between ourselves at all. It was just like, "No of course we wouldn't."

They were asked to have a second scan but did not feel anxious about this at the time.
Print Mother: In the very first scan, the twelve week scan, she did sort of, "Oh here are his arms, here are his legs." Yes, she did. And we were quite chatty weren't we? Was there any point when you thought she'd suddenly gone quiet or she looked worried or? Mother: No, I don't think so. Father: No, I suppose the only time I thought something was strange was when, as I say, when she said "Can you go and have a cup of coffee or a cup of tea and then come back?" And it was then we saw someone else instead of the first woman. And I suppose I only thought that after, obviously, once we found out. And so when she gave you the results it was a completely bolt out of the blue, nothing had prepared you? We did have a few tears, and we were shown into another room, weren't we? So she could go off and make the appointments with the specialist hospital and give us some more information really.

They decided to have heart scans only and not amniocentesis. Staff pushed them to consider this carefully.
Print Mother: We decided not to go for the amnio without really any discussion between us. We just, “No, we wouldn't do that. There's a risk and I couldn't possibly lay there and have a needle put into my tummy.” But we decided we'd go for the option of having more heart scans, or having heart scans to pick up other soft markers as well that would come with Down syndrome. So you'd decided against the amniocentesis. Then you went for a further heart scan. What was that? Mother: That was arranged through our local hospital, to go up to a more specialist hospital, and that was meant to be in two weeks' time. Unfortunately they got the dates wrong. They wrote them down wrongly for us. Father: So we turned up on a day later, wasn't it? Mother: Yeah. We couldn't see the cardiac sonographer but we saw one of her assistants or another sonographer, who scanned us and had a look at his heart. She very carefully checked off different parts of the heart and said that she couldn't see anything wrong, but she wanted her colleague to check everything else. But she made no commitment to the fact that he probably had an AVSD [atrio-ventricular septal defect], but checked the other parts. So we went back, I think it was about a week later for another appointment, and that was when we were told that [son] had an AVSD. We were asked to think very long and hard about having amniocentesis. It was probably a bit more than just being asked to think very long and hard, probably a little bit pushed. I think we had to go back two weeks later or the week after, and actually say, "Look, this is all the research we've done and this is why we've decided we don't want it." I think if we'd just gone back in there and said, "No I don't think we want it," I think they may well have pushed a bit more. Not because they wanted us have a termination or to go ahead with the pregnancy - I think they wanted to make sure that we were making our choices on an informed decision, not just wandering because that's the way life was taking us.

Meeting someone who had a baby with Down's syndrome made her re-think whether she should have amniocentesis, but her GP helped clarify her thoughts.
Print Father: I suppose the other factor as well it didn't really matter whether it come back Down's or not, because we always sort of knew that Down's wasn't an issue, so why have it? Mother: I think by twenty - well, it must've been about seventeen, eighteen weeks of pregnancy - you've already changed mentally and physically so much. And I'd got so attached to my little button already. You know, we'd been going for scans for two weeks, and then to wait another five weeks for the amniocentesis results to come back, I think it's so far into pregnancy I couldn't have done it. And yet you did have second thoughts for a while. Mother: Yes. Father: That was mainly just because of the, when it come back with the heart defects, that was the only thing. Mother: I went to go and speak to a friend of a friend who had had a baby with Down's syndrome about thirty years ago. He only lived unfortunately for about eighteen months. He passed away with leukaemia. And his mum was a theatre nurse, worked in hospitals all her life and she felt that it wasn't fair to have a baby who'd have to go through open heart surgery at his age. There was, at the time they were saying he'd need heart surgery between three and six months of life. She'd also gone through - every pregnancy she had had, she terminated if the baby came back with an amniocentesis of positive. That's when we - I came home that day, very emotionally draining day, and said "Okay we do have two choices." Her aim of that day was to make me have an amniocentesis, to make sure I was making my choices on the correct information, really. I still couldn't go ahead with the amniocentesis, but it did make me think, “Okay, we do have two choices. Was I just letting myself be carried along? Am I being fair to my baby to have open heart surgery? What's his future?” 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.

During pregnancy they went to meet other families and people with disabilities to help their decision-making.
Print Had either of you had any previous contact with Down's syndrome? Father: I'm adopted. I've got a cousin who lives up in [town], I think it is, who's got Down's syndrome, so I've only seen him once or twice. So I knew a little bit about it - not much, but I'd obviously seen him and stayed the weekend with him before. Do you think that had affected your reaction? Father: Not really, no. As I say sort of probably twice I've seen him. Mother: But you've had more contact with disabilities than I have, from your boarding school days as well. What kind of contact with disabilities had that been? Father: Cerebral palsy, I think, one or two of the lads had up there. Other disabilities I can't really say sort of, I wouldn't really know sort of what they had. Mother: Not a disability, but sort of conditions. You were on a farm, adopted onto, or fostered onto a farm with a chap with cystic fibrosis as well, weren't you? So having to go through the treatment every day. Do you think any of that was consciously going through your head or subconsciously? Father: I don't know if it was subconsciously or not, but I've never really sort of been one of these that looks at people and sort of just categorises them. I sort of just take them as they are, and as they come. So I don't think I've really sort of thought about it. And had you had any? Mother: No, not at all. I mean the only contact I've really had with disabilities was at school, when sort of once every couple of months you would have, you know, a special needs group come into your school and you interacted with each other. And that was it. So, yeah. We've actually been up to where [husband], to the house master that used to look after [husband] at boarding school. And he now looks after adults with different disabilities, with Trisomy 20, and another lady that has no control over, she has no communication and she has no control over her muscles, so she'll go to touch you and she'll push you out of the way. And I was absolutely petrified, and you just got on with it. You were quite happy to be sort of walking her round the garden and... Father: I think she was walking me round the garden. And this was after [son] was born? Mother: No, whilst I was pregnant. We went off to go and meet an awful lot of people that had been through different pregnancies, heart surgery, different disabilities, just to make sure that we knew what we were doing, to help with the decision making.

They would want to continue with the pregnancy unless they felt their baby could not give and receive love, or if his heart condition had been inoperable.
Print 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.

They wanted to be treated as normal expectant parents, and she joined local NHS antenatal classes.
Print Father: Yes, I mean, they put us in this little room, wasn't it, when we first turned up. Mother: We weren't allowed to wait in the waiting room with the other mums, in case - I don't know, I think they were probably trying to protect us, but I wanted to be in the room with the other mums. “I'm a pregnant mum, I'm proud to be pregnant. You know, why can't I? Have I got two heads? I'm not green. Have I got horns?” “Yes.” They didn't want me to do my antenatal classes with the other mums either. Did you persuade them otherwise in the end? Mother: Yes. And was that okay? Mother: When we went round the room to begin with to say who were are and everything, I did say to everyone that we're expecting our baby who's got Down's syndrome, he's got a heart condition. Most people were really quite up front and quite pleased that I'd said, but I did notice when we were doing our fears and anxieties, or hopes and fears, that nobody said that they wanted a happy, healthy baby. And I did actually say that, because I felt they weren't being honest because I was in the room. What did they respond at that point? Mother: Went a little bit quiet. But they've got, the classes were for them just as much as me, and they had to get out what they needed to get out.

Knowing before birth that their son would have special needs enabled them to make practical arrangements in advance.
Print Looking back now do you feel glad that you knew? Mother: Yes. Father: Definitely. Mother: We had seven or eight months to prepare - not just ourselves, but our family - to do research, to make sure that we knew that we had to try and get on the physio, the Portage [home-visiting educational service], the speech therapy lists. We, I actually went up to go and see the breast feeding counsellor before I had [son] as well, because of him being a heart baby with Down's syndrome as well. I knew that that was going to be quite hard and I knew that I'd probably have to express my milk quite a lot with him being in intensive care, so.

Having a baby with Down's syndrome has been a positive influence on their lives. The anxieties they faced did not feel very different from any other parents' concerns.
Print Mother: It is hard work, but it's really rewarding too. And we've got a lot of - not necessarily problems - but bridges to cross in the future, but doesn't every parent? Are they really that different? We're going to have the same anxieties as most parents out there. Father: If not a few more. Mother: Or a few less, maybe different ones, it's sort of... And have there ever been any points where you've either individually or together thought, “I wish we hadn't done this?” Mother: No, honestly no. Father: Unless it's been half four in the morning and you've got to get out of bed, but that's more because you've just woken up. Mother: You wicked man. Yeah. And how do you think it's affected you as people and as a couple? Father: I think it's, your general outlook is more understanding, I think, especially sort of towards people with disabilities, or say, sort of, other people with Down's, you definitely sort of - I suppose you look out for them more, if you understand my sort of... Mother: I think it mellows you as well, but I don't know if that's just parenthood. It changes your perspective of life and what's important, especially after the heart surgery. Does it really matter about the money and going out or whatever, as long as you've got your family and your health, there's always a way of getting by through everything else. I think it just mellows you. And what about your relationship together? Mother: It's been, I think it's strengthened our relationship through the pregnancy and through the surgery. Yeah, I think it's strengthened it. Is that how you feel as well? Father: Yeah, I do. But the nightshifts sort of can get a bit strained at times. Is that the worst time? Those, the nights, the waking up? Mother: Yeah, averaging sort of four or five hours sleep a night isn't very good, not very healthy. How do you cope with that together? I mean, do you take turns or...? Mother: It depends who kicks who out of bed. We used to take turns, but now exhaustion's beginning to take over. Father: I suppose the other way we deal with it as well is in the mornings we sort of always try and forget what was said in the heat of last night, or the morning's a new day - forget about last night and get on with it. That's what I think anyway. Mother: Would that be any different with any other child though?

They are optimistic about their son's future because social attitudes towards Down's syndrome are continuing to improve.
Print Mother: I feel a lot more happier about the future now I can see how him and his friends are fitting into society, how children are becoming much more mainstreamed and that attitudes are changing. That a lot of his friends really seem to sort of want to play with [son] because he's [son]. I guess the sooner he starts going to a normal pre-school as well as his special needs pre-school he'll have friends that he'll grow up through life and through school with. How about you? Father: Pretty much the same really. I just hope that when he does get a bit older that sort of he's not treated any different than any other kid. Because I know when I was younger, sort of anyone with disabilities was sort of like [gesture sideways] - but attitudes have changed a lot now, so hopefully they'll keep changing for the better. Mother: But of course already we're thinking when we have to move house we might have to find somewhere that has maybe a granny annexe or somewhere that we can extend, that he has his own front door, kitchen, bathroom, living room, and he can live independently, but still near us if he needs us, but I mean he... Father: Time will tell, won't it? Mother: He might be able to live on his own, down the road, or wherever he chooses, but for the moment we still have to consider that he will be with us forever. I quite like the idea of that. I can check out who his latest girlfriend is then, and check that I approve.

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