Antenatal Screening

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.
 

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'.
 

He had the surgery in September, beginning of September.

Right. And what was it like, having all of that done?

Traumatic, beyond belief. I mean, you know, probably, I don't know if I'm denial, but probably if I look back it was not as bad as I though it would be. Although in some respects it was much, much worse than you could imagine. Because it's not the natural thing to do, to hand your baby over to somebody to, you know, open up their chest, and do something which ultimately would be lifesaving but actually at the time was life-threatening. 

Because they said he, if they didn't actually operate he would live until probably 40, and lead a reasonably good life. So certainly for the next few years he would have been absolutely fine. He might have been small, slow to put on weight, but, you know, effectively, this surgery was, you know, extremely life threatening. 

I mean, it is risky. And you almost, or we almost felt like we were putting him through something that maybe he didn't need to go through. Although, ultimately, he would have needed to have gone through it, and it's much better to do it when they're a baby. 

But it was, you know, very harrowing. But still, you just need to look around you to realise there are people in much worse situations than yourself. And to them it was a very routine operation, and although the surgeon did come out of the operation and say, 'The hole was very big', really, you know, it was very straightforward for them, the surgery itself, and it was a success.

And they now feel that that's it, do they?

Yes, it is. He won't need any further surgery, touch wood. I mean, they're pretty certain that that's it. He's had his follow-up appointment. He's been given the all clear, so there's no reason why he would ever need anything else. He will need to have antibiotics if he has any surgery or any dental treatment, just to prevent endocarditis, I think it is, and he'll have to have check-ups for the rest of his life, but that's not a bad thing. 

He should start to, he's small for his age, but he should start to pick up. There's nothing, there's certainly nothing in the anatomy of the heart that makes them think that he won't, you know, continue to grow and be the size that he should be ordinarily.
 

Mother' Echo [support group] members sometimes visit the ward, to see how you're doing, how you're getting on - to let people know about the organisation. And, like I said, the first time I met her, I was just in such shock.

This was when you were first admitted?

Mother' First admitted, when we first found out. I just didn't want to know.

And so they come to the nurses on the ward and say, 'Have you got any new patients?'

Mother' Oh, no, no. They just walk around.

Father' They just walk around.

Mother' They leave their most updated newsletters.

Father' On the ward, and you get contact numbers.

Mother' To be honest, I found that helpful, as well, I did.

Father' Yeah, it's nice to read stories of other babies.

Mother' They've got other people's stories in there which I thought was good. And then the second time with the bronchiolitis RSV [Respiratory Syncytial Virus], we saw [name] again, and I said, 'Oh, like, are you recruiting?', and she said, 'Oh, no, my son's just had his surgery'. And I thought, 'Oh, what have I said?' But she invited us downstairs to see her son, to see what to expect, what we have to go through.

Father' It's not only that. It's, once you've had a child with a heart condition and you're in hospital, and you've found out about the heart condition, it opens an absolute chapter.

Mother' Yeah.

Father' Because you just suddenly find out, 'Oh yeah, well, I've got a heart condition. I'm having all this done and that's done.' And it's just everyone around you. And you think, 'Well, I've never heard of it before', and then suddenly everyone's got it, and it becomes like a normal everyday situation.

Mother' Yeah. That's it, you know, all.

Father' Heart condition. It's not as serious as you suddenly...

Mother' Think it is.

Father' As you first perceive. When you first find out you're like absolutely terrified, mortified, you just don't want to know. And then suddenly it's just like a cold.

Mother' That's it, it's - well, no, I wouldn't say that.

Father' Yeah, but it is. I don't mean like a, it just becomes an everyday thing. Lots of people have got it.

Mother' Yeah.

Father' Lots of people have had it.

Mother' That's it. You're sitting on this ward, and there's people from all different walks of life, all different races. That's it, different ages different backgrounds and families.

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Mother' Yeah, this is it. Because I found out - I'll be honest, I hadn't gone out at all. The last time I went out was November, December 2000, dancing. I hadn't been out. And the only night I thought, 'No, I'm going out' - I'm only going to bingo - I decide to go out, my mum's agreed to babysit - because my mum, you know, went through her own worries, was worried in case anything happened. She agreed to babysit, we were going to bingo - five o'clock that night I got the phone call' 'She's going in 17th October.' 

Father' Yeah.

Mother' I'm like, 'Of all the nights to pick to phone me.' But then again, I wanted to know as soon as possible, so I could plan with my other two girls.

Father' Did we go?

Mother' Yeah, we went.

Father' We did, didn't we?

Mother' Yeah. It's a good, good thing, bingo.

Father' Anything - yeah, anyone's having a baby or you've got worries, go to bingo.

Mother' Because all you concentrate on...

Father' Is the numbers.

Mother' Is that number.

Father' All your worries just go out of your head, everything just goes. I mean, bingo - I mean, I would never have gone to bingo.

Mother' Yeah.

Father' But if you go, it's just all you hear...

Mother' That's it - you're sitting there.

Father' Is the man calling the numbers out.

Mother' Calling the numbers.

Father' Everything in your brain just switches off.

Mother' Switches off. 

Father' The whole lot. You just switch off.

Mother' Number 22 - 'come on, 22'.

Father' And you hear your numbers.

Mother' And that is, I know there's...

Father' And it's such a great release.

Mother' Yeah, it is. It's good to forget.

Father' Hark at me  - a geezer, talking about going to bingo.

Mother' Yeah, but it is...

Father' It is...

Mother' I still think you need to get out, and relax and,just for that couple of hours.
 

And you talked about using the Internet to research what was happening in the States '

Yes, yeah.

' have you ever got involved in any of the support groups there, because there are a couple, aren't there?

Yeah. 

There are discussion boards and things, aren't there?

Yeah, yeah, we're in touch with a couple of individual families rather than support groups, because the situation is so different there. It's very hard to sort of compare the treatment, but we are in touch with a couple of individual families whose children are quite, in their teens now.  

I just very much wanted to know, I felt one thing, as I said to you before, we were robbed of a, the right to imagine his future and I really, it's very interesting for us to talk to families who've got older children and find out, you know, how they're coping and how perhaps psychologically they coped with it as well, you know.

I met one of the Left Heart Matters support group paid for a boy to come over from America, and his family, they paid for the trip for them to come and talk to us. And he's now, he's the oldest surviving child in America, he's 18, hasn't had a transplant yet. He's also like one of the first, the only survivor, I think, out of the first 73 children that were operated on at that time. 

But then the aftercare's changed, everything's changed since then, you can't sort of make comparisons. But for me it was so interesting to meet him and ask him how he had coped with it as a child, when he felt he needed to know more, you know, at what stage he needed to be told things and, and that was just, you know, a really worthwhile opportunity. 

And to have that vision of him at that age and to hang our hopes on that and think, 'Right, well, you know, my son could be like that. He could be one of the ones that gets to 18 without needing anything more than an aspirin occasionally, you know, and let's just think about that.' That was just so important. 

And I think even by going to the charity, I don't know that perhaps they, a lot of people are probably, as I said to you, sort of almost the way that I feel, reluctant to give you the nitty-gritty and the ins and outs of the day to day management of it. They're much more likely to say, 'Oh you know, yeah. It's, you know, it's been a bit difficult but we're okay now' or whatever, and you don't know.  

I mean, I had no idea what to expect. That first year was just, oh, incredibly difficult. We were in and out of hospital with, you know, [son] nearly died several times because the local hospital didn't detect things that were going wrong and you know, we had drug charts everywhere. I was sort of thinking, smiling at the other lady that you showed me with her feeding charts [see CH04 on the site on 'parents of children with congenital heart defects']. 

We had a similar thing, drug charts, feeding charts, so complicated. I couldn't leave the house without sterile water to mix his medicines up in and syringes and, you know, it was just so difficult that first year, and we were in and out of hospital a lot. We spent 4 months out of the first 6 in and out, in hospital, at various, you know, going in and out, in and out, in and out.  

And we were discharged quite quickly really, after 4 weeks, but lots of set-backs and other surgeries needed, and I just wasn't prepared for that, you know. N

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.
 

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 nee

It just amazes me sometimes that what she's been through and she's fifteen months old and she still laughs and giggles and, you know - I moan at having something like a headache and [daughter]'s had that many brain operations and different things, and she always comes up brilliantly. She's just brought, as I say, she's, I'm just not as selfish now I've had her.

I don't look, I don't think about the future, I can't think about the future. I take one day at a time. About, I'd say, out of a month, about two weeks out of that month she's suffering with some kind of infection. So really I only have two good weeks a month with her. 

On a day to day basis it's very hard. Because of the problems she suffers with sometimes you don't know whether she's crying because of the condition, or because it's just a general baby problem, so you have to go through the whole thing of, 'Could it be this? Could it be that?' all the time. When she wakes up, she screams and screams, and it's due to the head problems that she's got. 

She has what they call night terrors, and she screams and screams, and it takes about half an hour to comfort her, so nobody has ever had her overnight, and nobody's ever had her for a couple of hours to take her out except my partner, and that's it.

I think everybody thinks that, 'Just wrap her up in cotton wool', but that's the last thing she needs. But otherwise she's, the day to day is, night time's the worst because she doesn't sleep. She has about a maximum of fifteen minutes a day and then she seems to be like she's had twelve hours sleep. And she wakes up about between six and seven times a night, so I'm usually very tired and my partner he works full time, so he doesn't, he's up very early in the morning, so he can't have her through the night so.

How has it affected your relationship? It must have put a bit of a strain on...?

Our relationship, he's, we no longer live together no more, due to the strain of everything really, I suppose. He's here I suppose more times, he spends more time with [daughter] now and with the elder child, because he just comes and does what he does. 

But it has put a big strain on our relationship, it did do. It was just the question of not knowing that's the most difficult thing. If somebody could write it down in black and white for you it would be okay. At least you'd be able to get used to the idea. But they can't, they can't give you nothing at all. It's just time. So that's why I have to take day by day as it comes, because she is in, she's poorly a lot of the time, and she's admitted into hospital a lot of the time. So I think my older child suffers a lot from that.
 

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?
 

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.
 

It's had a big impact on my life, because after I had my second child I was planning to go back and retrain as a midwife, and when she was born, obviously that wasn't going to happen, because of the amount of extra support she needed, so I couldn't do that. 

But actually what's happened is I've ended up training to be a teacher for the National Childbirth Trust, who I was very involved with anyway, and that has been a very positive thing, because I've really enjoyed it, it's very flexible, fits in with the children, a lot better than midwifery would have done, so that has been a very positive thing. 

My time is - my life is very structured, because we have therapy - speech therapy, physiotherapy, play therapy every week, plus hospital visits for this, that and the other. And so you have very little what I would call Tumble Tots time, if you know what I mean. The time when you might go to Tumble Tots, or go round a friend's, and we don't really have a lot of space for that, and - which is the kind of lifestyle I had with my son, and in a way I think that's a shame, for her as much as anything.

Nothing is straight forward with a child with a disability. There are always - you almost have to ask permission to do the things that other people and other children take for granted, and that's not the fault of the disability, that's society's fault. I think - things are getting better - but I think there's still a really big long way to go. 

And people say to me, 'Oh, will she be able to go to the local school?' 'What do you mean, will she be able to go to the local school? She will go to the local school, because that's her local school, just like any other child's local school.' So it's impacted on me and I'm the one that has to fill in the disability living allowance forms, and, you know. So I suppose - I'm not saying it's been easy for him [husband], because I don't think it has - but I think practically speaking it's really impacted on my, on my life in a very practical way.
 

I don't know, I think for a lot of people - it's been relatively easy for us I think, in some ways - but I think for some people having a child with a disability is probably very devastating, and I think - but you just don't know until it happens to you how it's going to grab you. 

But the vast majority of people I know have felt that having a child with a disability, specifically a child with Down syndrome, is not a disaster. It's not a disaster. 

And in some ways it enriches your life. And it does, because I think it makes you less worried about things that don't matter, like what level reading scheme your child's on, and it makes you appreciate the things in life that really do matter more. 

And I think actually that makes you a lot more contented, because you're not constantly chasing things that, as soon as you get, them feel empty, like, you know, new cars, or better this or better that, because you, it really does concentrate your mind on what, what is important.

And that sounds really twee, doesn't it? But it's true. And I think everybody, whether their experience is good or bad, would say that it really concentrates your mind on what is the really, what are the really important things are in life. 

And also it's, I like the fact that everybody knows us, that she is and we as a family are sort of almost like little mini-celebrities, because we're the only - she's the only person with Down syndrome in the town, and people know her. And we go about, and it's like, 'Hello, hello.' 

And because she's very social and outgoing she is, she's the, the clich' child with Down syndrome, very open, very friendly, very happy and smiley, with a very stubborn streak. She's - I don't like the clich', but I'm afraid she fits it, unfortunately. She's very, she, she touches people - and in a way I like that, and I think in a way, really, if that's what she can do in her life, is to touch people and make people think about assumptions that they may or may not have. 

And I know this from a lot of my friends who've said, oh, that they'd felt devastated when I'd had her, devastated. But that now, I had a friend who said to me, 'I can't believe she's so happy in herself and she's developing' - not, she's not developing normally, but developing at her own pace. And she said, 'I can't believe that you could ever think about not having a child like that, when I see what she's like now.' 

But it's easy to say that when you see what she's like now, and of course I don't know what the future holds. We don't know what the future holds. And you don't, you just don't know, do you?