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Antenatal Screening

People's stories

Baby's condition detected after birth

Interview AN10

Interview AN10

Age at Interview: 32
Background: Children: three children, aged 9, 5 and 1½, Occupation: Mother - housewife, Father - self-employed (owns a dealership), Marital status: Living with partner.

Brief outline:Baby born in April 2002 with hydrocephalus which had not been picked up during screening. Baby has had surgery and is making good progress.

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Her baby's hydrocephalus was not detected in pregnancy, but at a scan at 38 weeks she thought the baby looked strange.
Print I had a scan at 20 weeks, and then they said that I had a low placenta and the baby has a growth spurt around 32 weeks, so they called me back at 32 weeks to see if the baby had in fact had a growth spurt and took my placenta up. They scanned me, in which it did, and everything was fine. They didn't detect anything that was wrong at 32 weeks. And then I started to lose like a green discharge. So I went to, I went for shared care, so I had midwifery at a centre as well as going to one of the hospitals. I went down to her, because I actually went into labour on Good Friday, 2 weeks before I was actually due, and the midwife examined me and she said that they thought the baby was breech, because what they could feel was too big for her head, it must be her bum, so they thought the baby was breech. My contractions slowed down and they sent me home. And then I, the following day I went to the midwife's, because of this green discharge, and explained I'd been in established labour the night before but they've sent me home. And she ruptured, she put a gel on my membranes to try and hurry the labour along. And she done a scan down there and she said that she wasn't qualified to do or to read scans, but I remember the baby looking like an alien on the screen. Looking back, I thought it looked like an alien. And then I went in, I actually went into labour a week after my term date. It was a long labour. I was in labour 23 hours and I was pushing for two. During this time they scanned me again to see if the baby was breech and they said that it wasn't, it was just a large baby.

She knew something was wrong as soon as she saw the baby after birth. The baby went straight to special care.
Print Hours and hours seemed to go past and nothing was happening. I had an epidural, and then I wanted to push, and I was pushing for approximately an hour, hour and half, and they tried to turn the baby internally, in which they couldn't do. And they said as a last resort they'd take me down to theatre, maybe for a caesarean, but preferably for a ventouse delivery. And they took me down, and my sister come with me - she was all gowned up - and my partner stayed in the delivery suite. She was delivered by ventouse, and she wasn't put straight on my stomach, and that's when I knew there was something wrong. I heard the word hydrocephalus and didn't have a clue what it was. And they put her beside me, and I remember thinking back to the scan and thinking, “My god, it is an alien”. She had, her head size when she was born was the size of my son's now and she was only 7½ lb born, so you had a scrawny little body and an enormous head. And she'd poohed while I was carrying her or while I was in labour, and I believe she had done that a couple of weeks earlier and that's what the green mucus was that I was losing, but they never picked up on that. So she was, where they'd delivered her by ventouse, she had a very large water blister on the back of her head, and where the cranium hadn't closed her head was very large from the water that was already in her brain. They laid her beside, they put her on a trolley beside me, and that's when I looked at her and then they, she was just taken away. And then it was said that she had hydrocephalus. She was cleaned and given back to me. By now obviously I was hysterical, as was my sister. I kept saying, “What's wrong?” Because I was, where I'd had the epidural obviously I couldn't move, and I was saying to her, “What's wrong, what's wrong?” And she was saying, “Nothing, nothing's wrong, everything's going to be fine”, and she was crying so I knew that there was something wrong. They give Lily back to me and I went back to the ward - sorry, back to the delivery suite. What happened in the next hour or so, I couldn't tell you. I assumed my sister went to phone the rest of the family because it was the middle of the night. I don't recall telling my partner. I don't know whether I did, or whether a nurse did, or my sister, I don't know. Then the baby was taken to be washed by the midwife, and I just remember thinking, “Why me? Why me?” It was very, very selfish thinking - looking back now I can say this, you know - “Why do I get a child that's not perfect? What have I ever done?” She was, I was then allowed to have her for a little while for cuddles and special time with just me and my partner and the baby, and then she was just taken to SCBU [Special Care Baby Unit]. I remember I laid there, which seemed a lifetime with nobody, apart from obviously my sister and my partner. My partner went home, and my mum come to the hospital with my cousin. And I started to haemorrhage. And I remember they went to see the baby.

They were told the baby had severe brain damage. It was hard to come to terms with the shock.
Print He said “I've got some very bad news for you. Your daughter's got severe brain damage.” And that's exactly how he told us. He then showed me a picture on the computer of a child with a normal brain and a child, and then Lily's brain, which looked, obviously there was a big difference. Lily had a lot of blood in her brain. And then he went. You know, we was completely dumbstruck, our world had just crashed. He didn't stick around to answer any questions. A million entered my head, I didn't know where to start. Then we asked if we could actually see him to answer some of our questions, and he took us into a little room which was, a patient, the parent's time-out room, sort of thing. And my first question was, “Was she going to die?” and he said, “No.” And then I thought, “I hope she does, because then it wouldn't, I wouldn't have to worry”, which is awful. And I'd never, I couldn't see any light at the end of the tunnel, or anything ever getting better. And the description he gave us was that this child would never do anything, that she was completely brain damaged, she'd have learning difficulties, wouldn't be able to walk and talk and speak. He said, “Hydrocephalus”, and I asked him what it was, and he explained that it was water on the brain, something wrong with the ventricles. And then he had said to me, I wanted to know why, the cause of it, really, and he couldn't answer that question without further tests, or I may never know the answer why. And then he left and we had time with Lily. And he said if there's anything we need or, he'd like, he was on call, we could call him. So and then we spent the next week in the hospital, which was just horrendous, absolutely horrendous. They put me on a ward, an enormous ward. It must have had at least 20 mums with their new babies, which I found really distressing, because, you know, they're all happy, they've had just had a child and, you know, I've got this child with something wrong with it. And I asked a very good friend of mine, who went to speak to one of the consultants, and basically told him that I had to be moved, there's no way I could stay on there. And they moved me to a littler ward.

If she had known how bad her daughter's brain damage was expected to be, she might have considered termination, in fact she has made good progress. She feels parents need more balanced information.
Print 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.

She felt both guilty that she must have done something wrong to cause the hydrocephalus and angry that it was not detected sooner.
Print 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.

As not all problems can be detected at the 20-week scan, she felt more screening should be offered in later pregnancy.
Print 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.

Although it was a shock to find her baby had hydrocephalus, she now feels her daughter has been a very positive influence on her life and given her new priorities.
Print So after that initial moment when they put her next to you and you thought back to the scan, things never looked back from that? No, I'd be lying if I said no. There must have been. Not now, you know, I could never think now it'd be easier if Lily wasn't here or it'd be easier if Lily could walk. Of course it'd be easier if Lily could walk, it'd be so much easier, but she's never walked, so it's not going to make any difference. It's the child that doesn't walk at the moment, she will walk eventually. I can't categorically say no. There must have been a time where I thought, you know. I remember [husband] saying to me - because at the hospital obviously he was really upset when I had the baby. It made us a hell of a lot closer, because he knew exactly what I was going through and I knew exactly what he was going through, you know - it's our child. And I remember it not hitting him until he come home and got into bed with the other two children and I remember him telling me then, you know, he just fell apart. But I can honest-, life would be easier if Lily never had special needs, but no, I would never change anything about her, no. And I would never, certainly wouldn't be without her. And I think it was just that initial shock of, it was complete selfishness thinking, “I don't want the extra work, I don't want a child with special needs.” It wasn't, I couldn't even look as far as Lily, you know, what would she need and would she lead a, you know, as normal life as she can. It was really all about me, whether I could cope. But then, you know, these things are set to try you and I believe, I really do believe Lily, I was chosen for Lily and if I couldn't cope then she wouldn't have been given to me. And I think that's what gets you through every day. You think, you know, you're doing this. I mean, you see these children on the telly and you think, “Ah”, and Lily's one of them, you know. I've been set a job and I'll make sure it's done. Don't know, I can't say that, apart from the initial shock of it, no. Do you still get thoughts about “why me?”, or..? No, because I've been blessed. I do, but not, “Why me, have I been given this child with special needs?” I think, “Wow, ain't I so lucky?” That's, it's completely turned round, completely. I don't get the horrible thoughts now. Has it made you feel different about yourself? Definitely, it's completely changed my life, my outlook on life. Before you'd think, “Oh, the price of bread's gone up”. So what? There's so many more important things to worry about than whether the work's done or. Definitely, definitely it's changed me, but it's changed me for the better. And now I think, it's made me take into consideration other people's feelings more, you know. Certain things I wouldn't say in case of upsetting somebody, or, yes it's definitely changed me - for a better person, I believe.

It helped her to know she was not the only parent to have negative feelings. It was difficult to share these feelings with close family.
Print I think a lot of people still haven't accepted the fact that Lily is different and she will always be different, I think they think that because she's doing so well she's going to end up normal, or, you know, what society sees as normal, and she's not. And I think that's very hard for people, to actually accept that, you know, she is going to have problems. They just see her as normal and she's not, she's never going to be normal. Is that hard for you to have them kind of saying, “Oh, it'll be alright”? No, no, not at all. Even my partner hasn't, I don't believe, accepted it. When I try to talk to him about it he says, “Oh, not now” or “I don't want to talk about it”. You know, people cope in their own ways and in their own time. And, you know, I see Lily every day and I push and push and push for her to get on. No, I don't see it as a problem. I mean, my mum is just, well, she's just heaven-sent, she's been there from the beginning, and my sister. She, as I say, she was at the birth. And it's hard to talk to them, because they've actually been through it as well. You know, they was there with, they were just as hurt as I was, so to talk to them was really hard. But I was never ever offered any type of counselling or anyone just to talk to, someone far away enough that I didn't have to consider their emotions. You know, I always talk about Lily's up sides and that, because they can handle that because it's good news. But I was never offered anybody to talk to, and it weren't until I came home from hospital and my second child was just starting to go full day at nursery, and her teacher phoned me and said that she'd take her in early for me, so that I didn't have so much travelling to do with the baby because of the hospital, which was great. And she actually told me she'd got a child with Down's. Now I'd known her for a couple of years and I never knew she had a child with Down's. And she said to me, as I said to you before, just silly things that people say, and it really does help and makes, it's silly things that stick in your mind. And I remember her saying, “Oh, I've been there and I know the horrible thoughts you must have had.” She went, “No doubt you thought, 'I want her to die, because it'd be easier for me'”, and I just felt this weight lifted off my shoulder thinking, “It's not me, I'm not a bad mum for thinking that, somebody else has thought it”.

She felt determined to help her daughter make progress, and took pride in her achievements, even though she often felt guilty and tearful about pushing her so hard.
Print How do you feel looking to the future now? What are your feelings about life with Lily in the years to come? Oh, great. I know Lily will have problems. We don't know whether she'll be able to, she'll never be able to drive. She's going to have obstacles - none that she won't get over though. I worry about school. You know, will she get picked on because she looks different to other children, because of her eyes? But then I think, you know, all children get picked on and bullied for different reasons, it's not because Lily's, you know, it might not be because of something medically wrong with Lily. But I really, I believe Lily's going to do really well, because she's stubborn like I am and she will drive, she's got the drive to do it, and she will push and push and push. And I'll make sure she'll get there. She will get there. Definitely. And the other children, they'll take her with her, so yeah. It worries me if anything was to happen to me what would happen to Lily. That really does bother me. It's really selfish, but nothing can happen to me until Lily's established and independent. I mean, the other two I know will be independent because they're very level-headed, but I've got to live long enough to make sure Lily is, so that I've got no worries. But yeah, it definitely makes you look different. Does it make you consciously do things like, I don't know, drive slower, or...? Yeah. Or look when you cross the road more? Definitely, definitely. This is completely off the wall, but even to things like if I don't - when my family see this, they're going to laugh, but - I have to turn tea-towels in the right way, or labels have got be round. It's like living with the enemy. And if I don't do it, I subconsciously think something's going to happen then. So it has to be done. So everything's very like being in the army. It's got to be done in routine, I like routine, and things have to be done properly. I mean, we've had physio today and Lily cried all the way through it, but I pushed her. She has to cry. If she doesn't do it, then she doesn't walk. If she doesn't walk, then she, you know, she don't get out to the garden. It's as simple as that. You've got to be hard. And don't get me wrong, I go to bed most nights and cry my eyes out. But to other people, and for Lily, you've got be strong. And you've got to have the drive to drive her there, and if you're, you know, she will get there. If you could have met her, you know, 6 months ago, it's not the same child that I've got today. She's just doing so well, and it's because she's got so much, so much love, so much help, and we just push all the way with her. Do you really go to bed most nights feeling tearful? Yeah. Oh yeah, definitely. Thinking, “I shouldn't have done that to her today”, you know - to the point where I've pushed her over on the floor to see if she'll put her hemi hand down to support herself, and she did. But I wouldn't have known that if I'd have done it, if I hadn't have done it. And, you know, most parents would have gone, “Don't push your child over.” You know, she's crafty. Like most children, she thinks, “If I do this I'll get away with it, because sorry little me”. Well, it doesn't work with me. I'm just as hard, probably harder on her than I am on the other children, because I need to be. She needs to be, you know, it's horrible out there, and I want her to be strong, you know, and be level-headed. And she ain't going to get there unless I push her all the way. But I do go to bed and think, you know. It's exhausting, it is exhausting. I'd like to, you know, I'm still young, I'd like to go out with my friends and at the drop of the hat do this. Or sometimes we have days just for the other two children, where I leave Lily at my mum's and the day is just for them. We take them out to the coast, and I leave Lily behind so that, you know, they get my time and she doesn't. But then I feel guilty with Lily, because I think that's a whole day I've lost out when she could have been in her standing frame, she could have been doing this. So yeah, there is a lot of guilt, still a lot of guilt involved. Do you keep that to yourself when you go to bed? Yeah. Or share it? No. No, that's mine. I'm very like that. I don't like to upset other people. And if I can get over a hurdle without any help then I will. And that's just the way I'm made. But I don't, and it's selfishness and all, because I don't want anyone to take the praise for Lily, which is an awful thing to say, I know. But no, Lily's mine and she's only where she is today because of me, and because of her own determination. And I don't want anybody to say, you know, “I done this for Lily”, because it's not the case.

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