Interview CH08

Age at interview: 3

Brief Outline: Daniel was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, VSD and Transposition of the Great Arteries. Treatment: cardiac catheter at 24 hrs old, banding operation at 2 weeks old, followed by 1st stage Fontan at 10 months old. Further catheters and surgery planned. Current medication: warfarin.

Background: Diagnosed during pregnancy (20 weeks). Parents' marital status: married. Occupation: Mother-Full time Mum, Father-Retail Manager. Other children: one younger child. The family live close by to a specialist hospital.

Explains that finding out at 20 weeks that her baby had a serious defect she didn't feel able to plan for his birth or the future until he was about two.

It was very, very hard, it was one of the worst things that I've ever had to go through. At 20 weeks being told that your baby might not even survive, it's horrible.

So how did you get through the rest of it, your pregnancy?  Is there anything that helped you?

Yeah, we, I, what helped me was that I could give this baby a chance. That, there's reasons for everything that happen and that's what kept me going was, I can give this baby a chance. And maybe as well what, what, another thing that I was thinking was Daniel's heart condition was, was very severe, is very severe and maybe when this baby's here it, it would help other children. If they couldn't perform something on Daniel to, to, to make him live or to help him with his condition then maybe they could learn from that for another, for another baby in Daniel's position.

So that's what kept me strong, the whole time, that I could give this baby a chance and whether Dan was going to survive or live I knew that I was giving him that opportunity which was probably the most important thing for me. And family got us through it as well because it is and, you've got people in the street coming up to you saying 'Oh, how long have you got?'  And you, well I never ever said 'Oh I've got 6 weeks but...'  I just smiled and said 'Well I've only got 6 weeks to go and don't know what I'm having'. It is, I have to admit to you it's, it's, it is horrible when you're expecting a baby that's going to have this problem because you, you can't plan and you can't go and buy things and it's not like having a baby. You sort of, you've got this bump but you're detaching yourself the whole time, the whole time. Even when Dan was born I found myself detaching myself which I'm only just probably over the last year beginning to come to terms with.  
 

Coming to terms with uncertainty is difficult for parents.

When the baby's newborn, in the first year of that baby's life, that is the most traumatic time because as the time goes on you become a lot more confident that things are going to be OK. Because all you want is for the doctor or the nurse to say to you 'Everything's going to be all right. Your baby's going to live and the operation's going to be successful'. And they can't say that. And that's all you want them to say. That you just want that certainty. But even now they can't, they can't give you that certainty which again is one of the hardest things to cope with, having a cardiac baby. They can't say to me 'When Daniel reaches 10 he's going to be absolutely fine' because they won't know. You have to, you have to grow with it, you have to accept it, you have to live with it. It's something that they can't tell you is going to be all right. And anything, as each stage passes you do become more confident.

The cardiac liasion nurse was her lifeline when she was caring for her baby at home after his...

Mother' Well we had a cardiac liaison nurse who was probably the one person that, that did get me through Daniel as a newborn. I did have my family, I did have [my husband] but she was the one person that put everything into perspective for me. All the time. And she was only on the other end of a phone. So if I ever had a problem, or was feeling frightened, she would come out, or I would speak to her on the phone. Which to me was priceless.

Father'That was your lifeline.

Mother' That was my lifeline. Without her I wouldn't have been able to cope as well as what I did because she always put everything into perspective for me. Because what sort of happens is you get yourself to fever pitch and you're 'I can't handle this, I can't cope with this. He's not taking his bottle. He's got this scar. He's crying, he's blue'. And you're, you're like 'Oh my God'. And then [the cardiac liaison nurse] would, would be on the other end of the phone, or as I say she would come to the house and within 15 minutes of her being there I'd totally relax because she would put everything into perspective for me.  She'd make me feel that everything was all right, that Daniel was only doing normal things. You know. She, she was absolutely brilliant and, and I would say if anybody who has a cardiac baby to use that liaison officer because they're marvellous. They really were.

Talks about how important it is to spend time together as a couple and not to forget to support each other.

Mother' Because [my husband] is right you do, you forget about what you had before and you've got this baby and not only is it new, he's sick and you forget about, you do forget about each other. And what the person meant to you before, sort of thing.

Father' You, you become...

Mother' You do become...

Father' You, you become selfish in the respect that as a husband and a wife I always put Daniel in front of [my wife]. And vice versa, [my wife] would put Daniel in front of me. And some people could say 'Well what's wrong with that? You're child's, is absolutely priority'. Yes, but you then build a wall between sets of parents and you need to be together rather than two individuals coping with it. So, you should take time out to still socialise with your friends. You should support each other as well as obviously your family side. Encourage each other to, you know, still go out, go to the pub, go the match, do the normal routines of a married couple. But never ever lose sight of the fact that as parents you were here before the children and when the children come on board.

Mother' It's sort of settling....

Father' It's a, it's a terrible thing to say you've got additional baggage, I don't mean that in that, in that sense but you still have to have your relationship as parents together and it's not a selfish act. You have to have time out, otherwise you'd be climbing the walls. We've experienced it in the past.

Mother' You see, before Daniel was born [my husband] and I were like that. We were very, very united and then after Daniel you sort of, it's, it's weird all, you're not, you think, try and not let that happen either. You sort of become individuals about the baby and you don't have that unitedness that we had before. Maybe in the first like couple of weeks and that, you're, you're still like that but then something happens. It's strange. And you, you're the mum and he's the dad and you've got Dan in the middle. And you haven't got that unity any more. What happened with [my husband] and I, not only did we have Daniel, we were also in the process of moving house. We didn't have a house so when we did bring Daniel home we actually went to my mum and dad's which added a strain to be perfectly honest because [my husband] felt out on a limb. Whereas I'd got my mum and my two brothers and Dan. And [my husband] felt he had nobody. And then I'm sort of not ignoring [my husband] but forgetful about him because I'm preoccupied with Daniel and I'm OK emotionally because I've got my mum and dad. Whereas [my husband] was stuck out on a limb. 
 

They focus on the positive things their son can do and don't treat him as a child with a heart condition.

Mother' It is difficult to distance yourself from the fact that your baby's got a heart problem at such an early stage and to be totally honest in that early stage it is heart problem and then baby. You've got to try and not let that be, you've got to see baby first, problem second, don't let that heart condition rule those first six months. And that's very difficult to do that, very difficult. Because we found that, to me it was heart problem, very ill child, baby second. So we missed out or I missed out on the months of Dan being a brand new baby, the joys of a brand new baby. 

Father' If you don't, if you don't look at the bleak side and look at positives, encourage him to kick a ball, encourage him to play with friends, be a normal 3 year old boy and that is what Dan is. Yes, there's limitations, there's always going to be limitation. You know, if he wanted to be a professional sportsman, in certain fields that wouldn't be the question but he can be a professional musician or a writer. It's your input into the child. We look at Dan not Daniel with a heart condition. We look at Daniel as a baby boy who's naughty like every other little boy and further down the line without sounding irresponsible, he's got a heart condition, we don't want to tag that with Dan, next to each other. We try to distance it. When it comes up to the point where Dan needs an operation yes, that's the moment that you absolutely dread and you are supportive to Dan.
 

Describes feelings during pregnancy of her second child and encourages other parents not to be frightened of having another child.

But I did feel I wanted another baby and Dan, Daniel was only 10, just 10 months. He'd had his first stage Fontan and I found out that I was pregnant. And I wasn't shocked. I was absolutely, I was delighted. I was absolutely over the moon. [my husband] couldn't speak for about a week. But at the same time we were anxious and frightened that obviously the same thing might happen. And we had a series of scans to make sure that this new baby didn't have any defect at all. And when the day came for us to have a big scan, it was like I was holding my breath. Until they actually told me that this baby was, had no cardiac defect. It was like holding my breath. And we went and it took about an hour and the consultant finally said that the baby's heart was 100%, had all four chambers. He couldn't see any problems.

And I was, it was a mixture of emotions. I was sad to begin with. I felt a bit guilty because I think Dan had that huge problem and this baby was going to be all right. But I still wasn't convinced even though the consultant had told me, I still wasn't convinced.

And when he was born obviously he was checked again thoroughly and was given the all clear. His heart was fine. We brought him home and I still wasn't convinced. And I kept watching for, to be going blue and I kept checking his nails and wasn't sure he was feeding right. And I took him back to the doctor's about 3 or 4 times to, to have his heart listened to 'cos I was that paranoid of him having something wrong with his heart. I think, having gone through all that with Daniel I couldn't believe that there was anything, nothing wrong with his heart. But I then eventually accepted the fact that his heart was fine.  He was fine. And he was 100% healthy. 

At the end of the day you have to live your life the way that you want to live your life and we want more children, so. It might sound selfish but at the end of the day the assurances that we had from the doctors and the nurses was that would be more unlikely than likely that we would have another heart baby.

And anyone who has a got a cardiac baby who's thinking of having another one I would say 'Go for it'. 'Don't limit yourself because you've got a cardiac baby. There's no reason for you not to have a normal child at all. I mean, it, it sort of makes things complete and a little bit better for you if, when you have a, a normal pregnancy, a normal baby. But, so I'd say 'Don't be put off having another baby'. I know, not everyone's like that but, try not to be put off by having another one because it does bring you a lot, a lot more joy [laughs], that's what I'd say. 
 

Emphasised the importance of spending time together as a couple, which can be forgotten when parents energies are focused on their ill child.

Father' And going back to what I was just saying a little bit earlier, what is also vitally important which is something that for 18 months at least after Dan was born, one as parents, you channel all your energies into your child. What you forget is that as a husband I have a wife and vice versa [my wife] has me and you stop talking to each other. You stop showing emotion to each other. You don't, you, you block everything that you have inside of you, tears, joy, fearfulness, you just contain it within yourself and you don't share it. Now the most, the most important people to see all these difficulties through immediately are the parents and we have to be supportive to each other. Now if you, if you stop talking in normal marriage, obviously you have problems but you know with a child with a disability if, if everything that you're doing is for the child and you become selflessness to the point of your child and you forget about yourselves then it does create problems in the future.

Now for 18 months we have, well for the first 18 months we didn't go out, we were frightened to go out. If anyone did go out it'd be one of us while the other person stayed here.

Mother' I don't think we did that though

Father' And, and you just forget that you have a life as well.  
 

Encourages other parents to be positive and have hope if they discover their child has a heart defect.

Mother' Take each day as it comes and babies are a lot stronger than what you think. And it's something that you have to accept because it's never going to go away and obviously throughout life they're not going to be like every other child because obviously with the cardiac condition there is, you know, certain negatives, the breathing, and the standing and tiredness and things like that. But they are, they're a baby and they're a child at the end of the day and they do everything as normal babies and children do. 

Father' So, newborns now, it's, it's not to give up hope, it's, it's just started. It's traumatic, it's every emotion that you could possibly go through but if you, if you're strong and stay united, yeah, you'll get through it and there are going to be down sides to, to life like there generally is but if you're strong and you have faith then you'll get through it. 

Mother' We never, we never thought that we'd get Daniel to three. Ever. From what we were told in the very, very beginning to even contemplate an hour with Daniel was hard. But each step, each step that you take is a positive step. And it's, each step that you take is a, is a more hopeful step. 
 

Advises other parents to relax and enjoy their new born baby when they finally get them home.

Because bringing a brand new baby home anyway is traumatic but coupled with an illness, it's heightened. But that's what I'd say, relax, try and relax, don't be tense and enjoy those moments because you don't get them back. That's what we found with [my younger son], you see we were lucky enough to have another baby who was absolutely normal, fine so of course we had all that back with [my younger son] in the beginning. And with having [my son] I saw how much I missed out with Dan by not relaxing, by not enjoying him, by not taking him to Asda to show off my gorgeous boy. Relax and be normal, that's my biggest piece of advice, relax and be normal. As hard as it may seem after you've been through such trauma, because it is a trauma, you've finally got them home, which is your biggest wish, just relax and enjoy, definitely.

How warfarin affects her 3-year-old son's daily life.

It's not so hard to cope with the warfarin at all. Not nice that he's got to take it but then again that comes part and parcel of Daniel. Basically it just thins his blood. Obviously if he has a severe knock we have to take him into casualty to make sure there's not sort of excessive bleeding underneath the skin but, you know a really bad knock, not a bump on the head falling over. I mean, you obviously use your judgement in that way. If he cuts himself we have to make sure that the bleeding stops but again judgement's used.  If it's sort of a cut on, outside he grazes his knee that's not going to need medical attention but if we was to fall on glass and really wound himself then we'd have to have that looked at. If he has antibiotics, that alters his warfarin. We have to get that checked straight away because the antibiotics messes with the warfarin. I don't know how, but his dosage will have to be monitored then. And that's basically it, really to be honest. Any bad knocks, he's not supposed to play sort of contact sports that sort of thing while, because he's on warfarin because any severe knock can be well, fatal really, but I have to say I'm not fazed by his warfarin at all. 

Differences in reaction to paediatric intensive care ward between husband and wife.

F' But when Dan came off catheter he was in high intensive ward for about a week. [my wife] found it extremely difficult to just even touch him.  I, on the other hand, had no problems with that so'

Why do you think that was?

Mother' It was because I was absolutely terrified of losing him. And, I didn't want to allow myself to, to even care about him and, I know that sounds terrible, I did care about him but to actually have the emotion of wanting this baby I didn't want to allow myself to feel it because I thought if he, if I did lose him I didn't know how I'd be, you see. And that's why. It's, it's really, I can't, it's very difficult to, to describe. When you've been told for so long that you're not even going to have this, that he's not going to live, he won't even make getting through the, the maternity ward to the operation and then he's there and he's had the operation it's extremely difficult to, one, accept he's pulled through to, to, secondly to believe he's there, he's, he's yours and thirdly it's like you love him to death but you can't, for myself, I couldn't allow myself to become close to him. And when he were in intensive care I did find it extremely difficult to touch him, to talk to him. I could only, I could only stand by the bed and then I had to go out because I found it that hard to, to see Dan lying there like that. [My husband] didn't. He, he, he was hands on, loving him, kissing him. I couldn't. 

You said that intensive care's got better?

Mother' Absolutely. Yeah, Daniel's been in intensive care 3 or 4 times since he was born and now I can go in and I can hold his hand and I can talk to him but not as much as my [my husband]. And I can't stay there for as long as [my husband] because I feel like it's totally out of my control and I don't like the wires and I don't like the monitors. He doesn't, he sees past, [my husband] sees past all that.

She was excessively protective of her baby when they were first home after surgery but she became more relaxed after a time.

When, when, when I did bring, when we brought Daniel home I wouldn't even take him out in the pram. I wouldn't, I wouldn't take him out for walks. I wouldn't take him to ASDA. I was, I was too scared. I was too frightened. I didn't think that Daniel would, could do anything. As I say, I wouldn't let anybody pick him up. You know, knew, everyone knew that this baby had come home and friends and people, neighbours were all coming to see him and I, I, 'Don't touch him. Leave him on the couch'. Only I could feed him. Nobody else could feed him. It was just, but you get through that. It's just because you feel you've got him home now, 'He's mine. Nobody's touching him'. Because I was, I was frightened of them hurting him as well, to be honest because he, they do have quite a hideous stitched scar and it's not very nice to look at and you have to bath them with this scar and you're looking at it and you don't want the water to go on it. But it's, it's a learning process.