Interview AN29

Age at interview: 37

Brief Outline: After four miscarriages, scan in fifth pregnancy found heart defects. Couple decided to continue the pregnancy. Son, now 4, has had some additional problems. Pregnant at time of interview.

Background: Children' 1 (age 4), Occupation' Mother - Office manager, Father - printer, Marital status' Married.

Her history of miscarriage means scans are essential but always worrying. Giving bad news must be...

Well to me, the twelve-week scan for the miscarried children were - well, they were horrific. And that's not because of the way that they were handled, but just because I, because of what was in my head when, when I actually went in to the scan room. 

I never dared at any time hope. I always had it in my head that it was going to go wrong, and even with the pregnancy that went on to my son, I still, every time I had a scan, I always thought this is the one where they're going to tell me that the baby has died.

How quickly in the first one did you realise something was up? Did she suddenly go quiet or lean forward?

That would be the second miscarriage. Yes they, they do and it must be so difficult for them. I mean, it really must be. Because, I mean, with the second miscarriage you, I didn't think that - oh, I don't know really. I didn't think that it would happen again. Although you're terrified, I didn't think it would happen again. 

But they're, you see them looking, and they always say to you, 'Well, look, we're going to go, if we go quiet don't worry. We're sort of, it's a very detailed thing we're looking for and ' Yeah, and then they just sort of say, 'I'm really sorry, but we can't find a heartbeat.' 

So, yeah, it's pretty horrendous. And I, you would think that I would never go near a scan again, considering the bad news that I've had from them but I think it's just, it's a lot of people's lifeline to know that - well, it's the only way that they can find out.

In an early heart scan in her current pregnancy the sonographer was friendly and welcoming, and...

The woman who did the scan was fantastic. I'd never had her before, and obviously when I walked in and saw that it wasn't the doctor that I expected, I thought, 'Oh my God, this is going to be someone who doesn't know what they're doing. It's just a junior person.' But she's been there for years and she was absolutely fantastic. She put my mind at rest. 

She made it, she built up a rapport with me and my husband straight away, and I went in there, although I was terrified, she made me feel very relaxed at the start, before we'd even sat down. Which I suppose is good, but then in some ways it might be setting you up for a big fall. But I mean, luckily for us it wasn't that. But she was really good, and as she was scanning me she was talking to the baby and saying, 'Oh God, he's a cheeky little thing, he's jumping up and down' and it just really made me feel at ease.

I mean I met, I saw her for half an hour, but in that half an hour she made me feel as if she really enjoyed her job, she wanted to do it. She didn't come in and say, 'Right, I'm not going to talk to you now for half an hour. Please don't talk to me, don't disturb me.' Which is what some of them do, some of them do say that. And she did say that, but she said it in a much nicer way. Yeah, it was, it just put me at ease, it made me feel more comfortable.

And you said that she put both of you at your ease. Did she pay particular attention to your husband?

Yeah, my husband's a very jolly chap, and he's very jokey, he loves chatting to people. And I think the husband is always, in every scan I've ever had, the husband is sort of like just someone that sits in the corner and is there to offer a bit of support. That's, I think, how the sonographers feel. 

But she, yeah, she had a, chatted with him, had a conversation, laughed and joked. I mean, I asked her and I know I shouldn't have done, I asked her if once she'd done the heart scan, if she would check for the sex of the baby. And she sort of jokingly said, she went, 'Look, the heart is the size of a grain of rice.' She said, 'I'm sure nothing else is going to be obviously standing out.' So we had a joke about it and, yeah, she made my husband feel part of it, which I thought was very good. And she said, 'Come and sit down here.' And she was talking to both of us, rather than just to me. 

Have you ever talked to him about how, whether he's felt kind of sidelined in'?

I haven't but when this happened with this scan, I said to her, I said to him, 'How did you feel about that?' And he said, 'It was really good to be, to feel like I was there for more than just to offer you support. It was my child as well.' So that, I thought it was probably the best experience, probably because they told me good news as well, but with the sonographer it was the best experience that I'd had.

She had a cordocentesis when a heart condition was diagnosed in her fifth pregnancy, to check if...

And they also gave us the option of an amniocentesis, because apparently the heart condition that my son had is also closely related to Down's syndrome. So we were referred to an obstetrician, who deals with that type of thing. And'.I ended up having a cordocentesis, which is when they do the same procedure but instead of taking amniotic fluid, they take fluid from the baby's umbilical cord. 

It's slightly more risky but considering I was, at that stage, twenty-one and a half weeks, if we had decided to have a termination they needed to find out really quickly if there were any other problems, which would - and we decided - which would mean we would terminate, then they had to find out quickly.

She had a routine fetal heart scan because she was diabetic, and was shocked to discover the baby...

But then at the twenty-one week fetal heart scan they told us that our son had a congenital heart defect. And that was pretty awful because they - well, they, the lady, there was a young girl scanning me and half-way through, she didn't say anything, she just said, 'Oh look, I'll have to get somebody else to come in and have a look.' And that's when one of the cardiologists came in and sat down, and said, 'Oh, we've got to, I've got to take a more detailed look.' 

And he said to us then that our son had, they'd found a defect in his heart, a couple of defects, and I just felt as if my world had come to an end. We both did. We couldn't believe that this had happened. We'd got this far, and I remember saying to my husband, 'My God, I only heard his heart beating two weeks ago for the first time, and it sounded so normal.' 

And they went out and left us in this room, and then they came back about ten minutes later and they took us in to see a counsellor and said, they sort of explained exactly what they thought the problem was, and gave us the option of a termination, told us what the outcome was likely to be. And, God, it was just awful, it was absolutely awful. 

I couldn't stop crying, and I felt so stupid for crying, because I must have been asking such stupid questions, such silly trivial questions. And what they did at the time, they just gave us some leaflets for support groups and that sort of thing, and said to go away and come back in a few days time, once we'd thought about it, and with any questions that we had.

The information from screening and diagnosis helped them in deciding to continue with the...

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.

She was terrified for her son when she had a premature emergency caesarean and he had to be...

We got over there probably about eleven o'clock. They did another scan and they found out that his heart had slowed right down, and that they couldn't wait to induce me. So they brought me straight into the operating theatre as soon as I got there, did an epidural, got that working. 

And I can just remember sobbing my heart out. I mean, I was absolutely terrified - not for myself but for my son, thinking that he's only thirty-three weeks and the longer he stays in there the bigger he'll get, the more likely he is to survive. I mean, I literally, I remember sitting on the bed and I was sobbing my heart out, while they were trying to put this epidural in my back. 

And at ten past, nine minutes past twelve - I, we'd only been there an hour and ten minutes - my son was born. And I remember when he was born and I couldn't hear anything, and they took him away - because I was, you could feel the sensation of them pulling about my stomach. And after a couple of minutes - and obviously you don't know what they're doing down there - but I just remember saying, 'I haven't heard him cry.' And one of them just shouted, 'Oh, don't worry, he's fine.' But they'd taken him off. He had to be revived. He was very blue.

So he'd already gone at that point?

He, well, he'd gone over to the other side of the room where they revive them, sort of there. And I said to my husband, 'Look, just go over and check that he's OK.' Because even then I couldn't hear him crying, and it wasn't, he was doing this like whimpering sound. It wasn't a proper hearty cry, and it was just awful, it was awful. And then my husband went over, had a look at him, came back and he said, 'Look, he's fine, they're just sort of getting him ventilated and everything now.' And then they brought him over. 

As they were walking out with him to take him, put him into the incubator, they just walked past me with him. And he looked - I sort of said, 'Can I have a quick look?' and they just sort of put him down. I couldn't hold him or anything, but they just showed me him, his head, and he, it was just this mass of black hair and it was just, it was wonderful. Most amazing thing ever. And then they took him off. They took a photograph of him and they bring it up to you, because obviously I'd had a Caesarean so I couldn't go straight down.

But we'd said to our family not to come up. We didn't want our family up there. And I remember my sister-in-law coming up with a bag of clothes, because obviously we weren't expecting to be there, and she sort of looked in and she said, she says to this day, 'I always wondered what I was going to find, with you, when I saw you.' But she said, 'The first thing that I' - because everyone was saying, 'Oh my God, how's she going to be? She's going to reject him and she's not going to want him. And she's so, going to be depressed' or whatever. 

And she said, 'I always remember looking into the room and saying, 'I'm not staying. I'm just dropping off your bag of clothes'' and she said, and I just looked around and said, 'He's just the most beautiful thing' - and she knew.

Her son's heart condition turned out to be more serious than expected but she still felt...

I mean, that's one of the things that happened with my son. They said, oh, he had a pulmonary stenosis and a VSD [ventricular septal defect]. And when they actually, he was born and they did an echo on him once he was born, it was, the VSDs were far more severe than they actually picked up in the scan. 

He had two very large ones that covered pretty much most of his heart. So yeah, I mean, they can't always tell, but then in some cases they, they can tell, and they do, they do get it right. But I don't think in our case, if they'd have told - maybe if they'd have said to us, well, it's far more severe than it actually was - I mean, that's the worry - then we may have made a different decision. That, I mean, obviously I've never thought of that. That is, that is the worry. But I think, I think it is good to be screened and to have the choice, and be able to make the decision.

In her next pregnancy she had screening again. She would not want to see another baby suffer like...

I mean we've spoke about it quite a lot since we've had our son - what would we do if we found out we had, we were pregnant again and we had another heart baby. Because of everything our son has been through, would we be able to do it again? So we have spoken about it since then, but we never really did at the time.

And do you think you've come to a conclusion about what you would do another time?

Well, pretty much. We said that if - I mean, I said after my son was born that I'd never had another child anyway. But when I, now that I'm pregnant again and I did, we have said - well, I've said that if it was another heart baby, or had anything wrong, that I would want to terminate, and my husband has basically said he would support me whatever I wanted to do.

And what are the factors affecting your thinking?

Basically because, although my son has been through more than you would wish on anyone, but he's through it, he's out the other side, and we can now see the light at the end of the tunnel. Because he's been through all of that, it is mainly my son. I wouldn't want him - he gets so distressed with going to the hospital for check-up appointments, and he does go regularly. And he absolutely hates it, and I would hate him to feel like that about a brother or a sister that he's - about his brother or sister, to see them go through that. 

Not so much about how me and my husband feel about it, because - I mean, I'm not saying that the last four years haven't been the most torturous of my life, but they've also been the best of my life. So - and it's been hard, but you, you do it. People say, 'Oh, well, how..? God, I don't know how you've coped, you're so strong.' But you do it. I mean, and I'm sure that every single person that I know would, if they were in the same position, would do the same thing. 

But I don't think that I would want my son to go through any sort of - maybe it's selfish. Maybe it is selfish to feel like that, because they are so resilient. But I would hate him to suffer, and I'd hate another child to suffer the way that I feel that he has. 

That was one of the questions we asked ourselves' 'If we knew what we know now, would we have carried on with our son, with our first son?' And although we've said, 'Yes, we would have done', again, we've said we don't know if we could do it again. It's very difficult to look back, and see the problems he's gone through, but also to see the end product and think, for one minute, that you wouldn't have wanted him. That's the hardest thing. Although it's, it's been awful, it's also been wondrous.

The results of a brain scan at 9 months suggested their son had severe brain damage, but they...

And it was pretty horrendous. I mean, they said that he possibly wouldn't walk or talk, his co-ordination would be, he would have no proper co-ordination. And we took him home after this, the gastrostomy operation and we just decided at that time that it wasn't true. It wasn't true. 

There was no way that our son, who was just this fantastic, wonderful little boy, that could be the problem with him. And as time went on he obviously had other surgery. 

He had to have - he had an undescended testicle and they took him in to bring that down and when they tried to do that they found out that it hadn't grown. It was just a lump of calcium, so they had to remove that. He had an operation on his foot to try and straighten it. He had a couple of little things that they thought were possibly, added up to a syndrome, some sort of a syndrome. 

And they've since done blood tests and genetic testing to find out, and they thought at one point he was 22q11, which is Di George syndrome [a chromosomal abnormality], but they can't find anything to do with that. Because he, because of his eating and his size, the testicle, the foot, the heart, learning difficulties, that's what they thought, but he just went on to prove everybody wrong. 

He took his first steps - he didn't crawl until he was twelve months old, and he crawled for seven months. And by nineteen months he was the world's fastest crawler. He could just get everywhere and anywhere. And then at nineteen months he took his first steps. He was behind, developmentally, but we, all the family just did so much work with him. 

I mean, we stimulated him, we read books, we did colours, we did everything with him, and yeah, he's just come on, and he's just so much, he's so different. He's a normal, naughty, healthy - [makes inverted comma sign] healthy - little boy.

And he's now at school?

He's now at school. I mean, if you go out of there feeling positive, then it makes all the difference, makes all the difference. And I do honestly believe that it was our positiveness about the situation that brought my son on, because we refused to give up. 

And some people - who don't know a lot about hospitals, who don't ask the right questions - some people are intimidated by these doctors, and we never were, because I, anything I'm interested in I go and read up about it. 

And we weren't intimidated. And it was because we felt so positive about it, and we thought, 'Right this is it. We're going to make sure that he has the best life that he can.' And really he's just proved everyone wrong. But some people would give up, and that's the really sad thing about it.