Interview CH05

Age at interview: 2

Brief Outline: Joe was diagnosed with Di-George Syndrome and Tetralogy of Fallots. Treatment: one operation at 3 weeks old, 10 months and at 18 months old. Current medication: none.

Background: Diagnosed at 6 hours old. Parents' marital status: Separated. Occupation: Mother-Student. Other children: one older child. Family live close by to a specialist hospital.

When she was told there might be something wrong with her newborn baby she thought doctors were mistaken because she had a perfect pregnancy. After she got the diagnosis it was the 'blackest day of her life.'

And he said that was actually a problem, that you know Joe's stats were quite low and he was quite blue. And to be honest with you I didn't even know what stats were, you know. And I just said what causes that, and he says "well we're not sure, it could be his lungs, it could be his heart, you know, we don't really know, but we've had to transfer him to another hospital and we've had to put him into the ITU department and, you know, we'll see what happens. And to be honest with you, I just didn't really take it in. You know I just, I was shocked really, I just wasn't expecting it because everything up until that point had been perfect. I had a perfect you know pregnancy, a perfect labour, everything was perfect, and then to be honest with you I couldn't see anything spoiling it, so I didn't take any notice really.  

And then I asked "could I go over to him" obviously, and they said "No, you've just had a section, of course you can't" and then so I just thought there's nothing serious, they don't look worried, I'm not going to worry, So I just went to sleep and basically didn't worry, and then by the morning when my morphine had worn off a bit I did start to panic then actually. You know. I think it hit me then in the morning, that then actually I think something is wrong.

To be honest with you, that day, I didn't talk to anyone. I didn't go out of my room. I was just so upset. And I was so worried and I mean when I say that was the blackest day of my life it really was. You know, I've never had a day like that before.  I was just literally pacing my room. I didn't talk to anyone or speak to anyone or anything. 
 

Suggests focusing on one positive aspect.

And I think that the way I coped with it is to just find one thing that is really positive, for me it was breast-feeding. Just find one really positive thing and just focus on it. Then really, really try and focus on that. I really tried to focus on Joe's feeding and when he was in hospital the way I tried to keep Joe my baby, and to keep in control was to insist that he was fed breast milk through his nasal tube. And to insist that I was allowed to express, just so I could keep a grip on it basically. To allow him to be my child. It might be that you know your child isn't going to come off the nasal-gastric tube, but just find one way of being positive. And focus on that one way. It might be something really simple. But you will find that'll help.

Felt that there was a tendency in the support group she attended to focus on negative things and did not find this helpful.

Then again there's the other side of it that, you know, sometimes I'd go to these support groups and because I'd got through the pain and I was ready to be positive and ready to face it, I just found that a lot of them were focusing on the negative things. And it almost became a competition as to see whose child was the sickest and for me, personally, I just wanted positive reinforcement. And I wanted people to say you know this is really going to be good and everything's going to be fine. And I wasn't getting that there, so I stopped sort of getting involved with them, after a while. But they were when I needed them, and they gave me the information that I needed at that time. So they are good, they have got a role, definitely.
 

The way her child's doctor communicated her son's diagnosis was not helpful and suggests the way that would have been better.

I think, again it's really difficult, because it's not their fault and no matter what happens it's not their fault. They can't take your grief and your pain away. And I think sometimes we expect them to and they can't. But I do think it would be really helpful for the consultants to get some sort of training or some sort of guidance on giving a diagnosis to parents. Because it is such an awful time. That the way they give the diagnosis, it could maybe in my case it was given really badly, it was a really negative bad experience, Because the doctor clearly had never done it before. And the doctor was really distressed, and he was really upset and I was really upset and it was a really horrible, horrible, horrible time for everybody, And I felt sorry for the doctor never mind myself. And I think if he'd have been given some training on how to give me that diagnosis it would have been a lot better for everyone concerned. And I felt bad for him really, because it must be awful to tell parents this is what's wrong with your kid. And then, I don't think they're given any training in how to do it.  

One of the things there is supposed to be, it's improving I think. So how would you have liked for him to have told you?

Well first of all I'll tell you the way he did tell me. He just sort of fidgeted and was like "Oh, god, I don't want to tell you this but I've got to", "Oh this is really awful, how do I tell you, oh I'll just blurt it out and tell you, your son's got this condition and it was just... now if he'd just sat us down really calmly like he does this every day. "I'm just going to tell you what's wrong with Joe, and then I'm going to go away for half an hour while you have a cup of tea. And then I'm going to come back and talk to you and I'll ask any questions and we'll tape it so you can take it home and that would have been great and he could have told me and I could have sat in the room with [my husband], had a cup of tea, and then thought, oh, and if he'd come back half an hour later and said now I'm going to tell you again, and I'm going to tape it and I'm going to write it down and then you can go home and then we'll meet again in a week and you can talk to me then or you can talk to some, anybody, it doesn't have to be him. I know they're busy. It doesn't have to be him. And we'll meet again in a week, and we can talk again.  

That would have been great in an ideal world but I understand they haven't got that time. And, or have you? It would have made a big difference I think. I think the fact that I had nothing to bring home, other than my memories and my memories weren't clear.  Because all my memory was, was fear. I think in a very, very, very, distressing situation having to rely on your memory is not a good thing, not for the hospital and not for the parents. And certainly not for the baby. So that needs addressing I think.
 

Explains why she felt it was important to talk to her one year old son before he had his surgery.

And when Joe went in for his big corrective surgery, I spent a long time beforehand talking to him about it. You know, and ok, he might not have been understanding it but I explained to him what was going to happen and I explained to him how long he was going to be there and that you know I was going to stay with him and I wasn't going to leave him. And he wasn't going to be frightened because I'm always going to be there. And, so I think he knew that mummy was always going to be there, she wasn't going to leave him at all. And that he didn't need to be frightened, because I was there and you know I wasn't going to leave him and if I couldn't be there Nanny would be there and so even though he was one I felt it was really important for him to know that. Because I was scared so I can't imagine how he felt. I mean he was the one having all the horrible things done to him. 

Daily life involves many hospital appointments but doesn't hinder the quality of their family's life.

Yeah, I think the one thing that, I remember when Joe was born and the Health Visitor came to see me for the first time and she said that, you know, you have to get used to the fact that from now on this is what your life's going to be like. Oh god I could of slung her out the front door I was so angry with her. You know, I thought 'How does she know? Of course this is not what my life is going to be like'. But looking back what she said was really poignant because it is what our life's about now and, you know, and, and our life does involve Joe having to go to the hospital, not just for his heart but for his other problems. You know, and Joe's got a lot of problems that he has to see a lot of different professionals about. You know, and a lot of my life is going to this place, that place and the other and, you know, we do have to work round that.  

But even though that's the case and that's what our life's like now I wouldn't say that's really, really hard or really, really bad or, you know, it's just part of our life. We don't even think about it any more, we just do it, we just get on with it. You know, I've, I've got a really good life now.  I love my life and I live my life to the full and so do my children.  And part of that is having to go to the hospital and having to go and see professionals and, and having to do all the things we have to do with Joe. So it hasn't really hindered my life that much. 

Even though it's the hardest thing I've had to do in my life and it's the worst thing I've ever had to go through in my life, it has just changed my life, but for the better, you know.

I know what life's about now. You know, and Joe's just fantastic. He's just changed everybody who meets him, he changes their life, you know. And I think all of us as a family, you know, just have a much richer life now because of what we've been through with him. And, you know, he is a fantastically loving, wonderful, giving child.  He is, he's lovely. 

Explains how her older son had benefited from the support group his mother had joined.

But the one thing I did find really useful actually even though eventually I didn't find them useful, support groups, I think [my oldest son] found it really, really helpful that other people at then support group had brothers or sisters that were poorly and you know he used to go along and see children with nasal tubes and oxygen and he used to think this is really quite normal actually. You know there's other people and it's really quite normal and these people here have got a brother and sister that are always ill they feel the same as I do. And you know I think he started enjoying going to these little things.

He used to go to the support group?

Oh yeah, all the time, and we went to the zoo, and we went on outings and we went away for the weekend with them and you know, I'm the sort of person that I'd never do anything like that before I had Joe, never. You know and now I go on anything that's going now so [laughs] but I think [my oldest son] gets an awful lot out of it, an awful lot, a tremendous amount, even if I don't, he does. And it's you know that's good; it's something that's positive.

Comments that her son's diagnosis has changed all their lives for the better and she is looking forward to the future.

I've already said to you I went to hell and back with my heart baby. And anybody who's watching this who's got a heart baby will know exactly what I'm on about but I will say that it has changed my life so much for the better, I just can't begin to tell you. It really has. I mean it's changed my other little boy's life so much for the better and Joe is just fantastic. He's just a snotty, dirty, horrible two year old who hasn't got a clue in the world that he's got problems. He's just happy and he just doesn't give a monkey's about anything. You know. And now we just, we live life to the full, we really do and we don't look back now. We've got problems and we have to deal with them but that's OK.  

You know, and my parents are a lot happier and they're a lot closer to us now and I'm a lot closer to my sisters now and the kids have got a nice relationship with their dad that they're comfortable with and I was in a really bad marriage and it give me the strength to get out and we're friends now when we weren't before. You know a lot of things have changed and it's really good now and I'm really looking forward to the future now because I know Joe's going to be fine. I really do, I really do believe that Joe will be fine no matter what he ends up doing or no matter, where he is I just know he's going to be fine. And he's happy and that's all that matters to me as his mum. That he's happy. And really that's all that matters to me about anything is that we're all happy. And so, and we are, we're all happy and healthy at the moment. And I'm really looking forward to the future now. It looks much, much brighter than it was. I've gone from hell to at last being happy.
 

Describes how her son had found it useful reading a booklet produced by HeartLine for siblings.

I think I just said that you know his brother's got a poorly heart. Actually HeartLine gave me a booklet specifically for siblings and I think I sat and read that to him again and again and again and again, about every night for about seven weeks. You know and it - funnily enough this little booklet did become really important to him. You know and he's still got it now you know and he does still go on about it now, so I think that really helped and it was just like you know Billy Bear's going into hospital to have his heart fixed and Billy Bear's brother is feeling this and this and you know, you know it's just a little story for him, but he could relate to it.

Comments that she found it difficult splitting her time between her children when her baby was ill and why it is important to find help from family or friends.

One of the things I do is I really beat myself up over you know when I'm leaving [my oldest son], you know I'm not giving him as much attention as I should do, and you know but you can't you know, you can't breast feed all night and all day and do medication and look after a sick baby and be the perfect mum to your other children. You just can't and I think that's where you have to find someone to help you. You know if it's a neighbour or your mum or your sister or your auntie or your cousins, best friends, nephews, next-door neighbour, just find someone who can help you and let them take on that role just for a while. Because you can't do everything, you know, and I know you feel bad about it but you've just got to go with it really.

Her two year old loves going to nursery and his development has progressed since attending nursery.

Yeah, but he loves it, he absolutely loves it. I felt really bad at first taking him. I thought, 'Oh' you know 'I can't really do this to my child'. But he absolutely loves it. He just 'Bye'. He doesn't give a monkey's, he absolutely loves it. And, yeah, he's doing ever such a lot more, you know, when he's playing. Like before he used to just play with the same old toys over and over again but now he gets the cars out and 'brmm, brmmm' and it's just loads of little things. And he's, and he's always in the garden and digging and stuff and he never did that before. And, you know, he's obviously watched all the other kids do it and you know he's really catching up now. He does, he does loads of little things that he never did before and, you know, and it's given me a bit of time as well. Because I think it's, and I'm sure that other mums have said this to you but you feel really bad about taking them to nursery because they have got problems and you should be looking after them but you've got to remember that if you don't have a break and have some time for yourself it just consumes you, it really does, and that's not healthy for anyone. You know, and plus it's good for Joe, he doesn't want to be stuck at home with boring old mum all the time does he? You know, he doesn't want, he's probably bored stiff with me all the time. He loves going out with his mates and going off to nursery.

And physically is he any different ?

Physically I've noticed that Joe is different from other two year old's, I have noticed that. And I have noticed that since he was born, that he is different from his peers. And at first that was really, really hard to take on board that was. It used to really upset me. And people always think that he's a lot younger than he really is. And he's a lot smaller than other children of his age and he doesn't do half the things that other children of his age do and a lot of that is because he was poorly and a lot of it's to do with his other problems. But physically, he is different from other kids but that's OK, that's just Joe. You know, he's lovely. And everybody loves him, they do. Everyone that knows him really loves him because he's such a character. He really is and everyone's really fond of him. But since he's been going to nursery physically I suppose he's more active, yeah, a lot more active. And he's walking a lot now but he didn't walk when he went to nursery. He was two and he still didn't walk when he went to nursery.