Interview CH18

Age at interview: 5

Brief Outline: Their son was diagnosed with mirror image, transposition of the great arteries, left sided valve atresia and pulmonary stenosis. Treatment: A BT Shunt at six months old, followed by the Stage 1 Glenn procedure at 4.5 yrs. Cardiac catheter operations every 2 yrs. Further surgery is planned. Current medication: aspirin.

Background: Diagnosed at one week old. Parents' marital status: married. Occupation: Mother-Full time Mum, Father-Ex-Dockyard Worker (now caring for son). Other children: one older child. The family do not live close by to a Specialist hospital.

Their baby's serious heart condition was discovered during his routine discharge examination.

Mother' Well unfortunately nothing was ever picked up during pregnancy, so we didn't know about him until after he was he born and it was on the day that we due to come home that they'd done a final hip and heart check. They heard that he had a murmur and they wanted to do an x-ray before they sent us home. And when they'd done the x-ray, they found out there was more than just a murmur, so we got sent back to the room and they'd done continual tests. They wouldn't tell us anything. They just keep taking him away for test after test and that went on for about 3 days until they finally come in and try to explain to us what was wrong with him.  

Yes it was a normal pregnancy check-ups were all regular, they were all fine, [our son] was two weeks overdue and that was it basically, nothing was ever picked up and it wasn't even picked up on the day he was born because there wasn't a paediatrician in theatre. So it was on the day that we were due to come out, we had him all wrapped up in a shawl.   

And during those few days before you did come out, before he started having the tests, was he showing any symptoms?

Mother' He was slightly blue but we just, we thought he was cold so he kept getting wrapped up but obviously, he wasn't. So that was that.

Father' Your mother, your mother thought he's breathing was a bit unusually, [M' Hm, hm] and we didn't pick up on that. [M' No] We just thought oh he's fine, he's fine, you know but [Mother' Apparently he wasn't], No.

Explain that information passed on to others about their son's heart condition had become distorted.

Father'  Shock, very shocked.

Mother' Very shocked. I mean, like everything else once they had, had time to think about it then it's like everybody's parents really, they're, they're your strength. They don't, they're not there all the time but they're there if you need them [Father' Hmm] to talk about anything, you know, or to give you a hand or, so family's very important when you're going through things like that.

Father'  I mean it's, when you're in the hospital and that and you get things explained to you about the condition that your son's got, then you've got to go back and explain to your parents which makes it harder again. And then they break down and you try to be strong for the wee boy and then go and tell their friends and then suddenly we found out that our son's only got half a heart.

Mother' Yeah. It escalates.

Father'  Some people don't listen and then they come back and it's like you have to deal with, the day we got married, your friend's mother was there - eh? - and we were sitting out the back in the sunshine - eh? - because we went back to the house for the reception and that and she says 'How's your son doing?' I says 'Oh, he's doing fine, like, you know, we're quite happy with him' and 'It's a shame that he's only got half a heart'. I says 'Sorry?' I says, 'He's not got half a heart' and she says 'Well that's what I've been told he has'. I says 'Look I am the son's father, if anybody should know I will know'. But it was because, well one of our, [Mother' It was...] one of our parents saw the doctor show a diagram and he took the heart in half and showed him inside it and when he'd picked it up wrong and thought he had half a heart. You know. But things like that, I mean...

Mother' They showed them the half that was actually needing the work done so they assumed that ...

Father'  That he had half a heart.

Mother'...he had half a heart. And it wasn't. Just, too much things going on in your mind all at once, you can't really take everything in so.

Explain their different information needs and how they managed to both get the information they...

Father' Because I wanted to know. I mean I wanted to know everything but I know my wife didn't. As long as knew I would be quite happy and now, I mean, it's like we watched a programme on television one night and it was about a child with the same illness as what our child's got and we saw the operation and the outcome and that and I watched it and I thought 'That's absolutely amazing'. But then my wife watched it and she broke down, yeah?

Mother' I had, I had to go away to a different room and watch something else after about 15 minutes. [Father' Yeah] I'll cope with that when I need to cope with it but I don't want to watch it on the TV.

Father' And like that, I've said that to all the doctors 'Tell me up front, tell me everything. I want to know everything. Don't keep, hide anything at all. If my wife doesn't want to know, I want to know. I mean, we've done that quite a few times, yeah?

Mother' Well, most of the time I'll stay there and I'll listen to it but if I don't want to listen to it, it's not that I don't' want to know, I would ask him later when I'm ready to hear it.

Father' Yeah, I could tell you...

Mother' You know, a gentler way.

Father' A milder way, yeah.

Mother' If you like. But that's, that's how we go on with it, basically.

They felt very alone and unsupported for the first six months after their son was diagnosed and...

Mother' Well, we would have liked to have, we would have preferred if they'd been straight with us and told us in layman's terms what was actually wrong with him and then hopefully gave us leaflets on each of the problems that he had and let us read them to see exactly what was wrong with him and what they could do to help him. But we were given nothing. We were given it in medical terms and all we were told was that if you give him the operations you could have him until a certain amount of time.

Father' And also counselling, [Mother' Yeah] which we never got.

Mother' We had no counselling.

Father' We felt so alone.

Mother' No help.

Father' And we felt really alone, eh?

 We were on our own coping or trying to cope as best we could with a child with congenital heart disease. We knew nothing about it. We didn't know how long he was going to live or [Mother' No] anything.  

Mother' And it wasn't until we actually got in touch with the British Heart Foundation that they gave us some, an absolutely fantastic booklet that explains everything that you can think of and it was then that we read the symptoms. We had a list of symptoms that he had and we read each and every one of the symptoms and that's when we realised what was wrong him.

Father' And if you, if you felt down about it at one day, if you were really depressed about it you could phone the British Heart Foundation up and you could actually talk to somebody on the phone who knows about that sort of condition that we've got - eh? [Mother' Hmm] our son's got and they can talk to you and I've phoned umpteen times and when, when I've come off the phone, I've felt slightly better because I knew a bit more about what we were going to go through. But we did not have a clue what we were going to go through, eh?

Mother' Yeah, it was very bad. I mean, OK people in hospitals and that, surgeons and things, they know these symptoms, they work with that. Parents don't. It's your child. It's not somebody else's child, it's your own.

Father' It's not a number.  

Mother' So, I mean, they work with that, that's their job. OK they're great at doing what they're doing but that is your children and you, you've just got no idea that the emotions and everything that you feel from day one and if they explain things a little bit better and tell you about leaflets and help groups that you can go to I think it would help.

Did you speak to a nurse, was there a cardiac liaison nurse?

Mother' There was after, when we went for [our son's] first operation. [Father' Hmm] But that was the first, he was 6 1/2 months old. That was the first we had really spoken to anybody like that.

They don't treat their son as disabled and make their home life as normal as possible in between...

Mother' So I mean you live with it every day. [Father' Hmm]  As I say, trying to make it as normal as possible when you're at home I think helps. Not making it that there is a disabled child in the house [Father' Hmm] make it normal, you know.

Father' Yeah, don't wrap them up in too much cotton wool.  

Mother' No, have, have the fun.

Father' Don't let him know he's disabled. Let, treat him as a normal child and that way he'll grow up to be a normal child. [Mother' Yeah] He won't grow up thinking 'Oh, I'm disabled, I can't do this, I can't do that' you know.  

Mother' 'Why am I so different?' You know, all those kind of things. [Father' Yeah] You don't do that when you're at home. You make your home environment as normal as possible and that's how we cope. [Father' Yeah] The only time we have to think about it is when we get an appointment card through the letter box.  

Explain that they try to make hospital appointments fun.

Mother' Yeah, because if he goes for a check up we've got, what we call now is the ECG, we call that his 'sticky pads' and for his echo that's his 'jelly belly'. So we'll say, he'll say 'What am I getting done today?' We'll say 'Well, jelly belly and sticky pads' and he knows what you're talking about now. So, it doesn't' frighten him, you know, all the big machinery. If you just say 'jelly belly' that's the way we cope with and he thinks it's quite funny actually. 'Am I getting my jelly belly?' So'

Father' He's quite happy with that. 

Mother' You do have your own way for things. 

Father' He's quite happy to go through that as long as he doesn't get a jab. That's the only thing that terrifies him. [Mother' Yeah]. Because of what he's, the way they done it before. You know, [Mother' Right from the start] needle in the' 

Mother' So that's why now we just don't allow it, we get him sedated first. [Father' Yeah]. We make him more relaxed. 

Father' And that's quite funny.  Was it, what's he call it?  'Wibbly wobbly'     

Mother' Yeah, I'm all wibbly wobbly.

Father' Yeah.

Mother' It's, it's quite, you usually find that these children have got quite a character about them [Father' Yeah, definitely] and it, it kind of helps you both. It helps the child but it helps you because you can have a laugh about it with them. You can be more relaxed, you can have fun and that helps you to make it, to make them aware. So having your own little sayings for things and the, the children have their own little sayings for things. And you do laugh about it. [Father' Hmm] And it's great, I think it helps, you need to do that.

Describe what happens when their son had a cardiac catheterisation.

Mother'  Well, obviously, you go in to the hospital. They, they get the, your child all sort of prepared and things and then they take you to the, the theatre. You've to sign a consent form. Then you go in with your child into theatre until they anaesthetise him. And then they take over. Basically that's all we know. We know that they put a camera into the groin and up through the vein into the heart and that is how they do a cardiac cath. But apart from that we don't know anything else about it. They, they explain to you what they're doing. It's a big full detailed x-ray that's the only way they can have a look inside.

Father'  And they did explain that there is a risk as well.  

Mother'  Yes, there was, there's a risk with all the operations.

Father' Yeah, all operations. I mean, it doesn't matter if you're a heart patient or any patient, there's always a risk.  

Mother'  Yeah. I mean basically you're there until the, the children go to sleep and they go through the operation then you're, [Father' Then you...] you're there when they bring them back.

Father'  Then you have a cry.

Mother'  Then you have a good cry [Father'  Yeah] you think of them coming back to you. But that's about it, it's a big detailed x-ray that goes up, that, that uses a vein that goes from the groin to the heart and that's how they do it. And they run little tests and take little samples sometimes when they're there and'

Father'  Basically the next day he's fine.

Mother'  Yeah, they keep them in, they keep the children in overnight'

Father'  Just for, to monitor them. And next day they get home.

Mother'  And then you get home.  

Father' Before you know it they're running about again.

Describe the various help they received to care for their son at home.

Father' I mean there's Carers' Premium, there's Disability Living Allowance, there's all these, and we didn't have a clue 'cos nobody had actually explained that until we, we got [our son] home and the house that we stayed in there was only a coal fire down the stairs, there was no heat up the stairs whatsoever and we know with heart patients they need to keep warm. So we applied to the Council and they weren't very forthcoming, they says we'd have to wait seven years to get a move and they wouldn't do nothing to get the, the heat put in. So then we went through our local councillor and then the social work department got involved and before we knew it, we'd got central heating put in. And as soon as that was put in we got moved to another house with central heating, downstairs bedrooms, things like that, you know, we got everything.

Mother' Hmm. But it wasn't until we'd actually tried to get the heating for him that we found out about all the help that you can get which in a way I feel is wrong because people are not forthcoming with things like that and a lot of people don't know. We didn't know. We didn't know that all the help we could get until the social worker had been in touch with us about the heating system and she asked 'Are you getting this? Are you getting that?' And we didn't have a clue.

Father' We said 'No'.

Can you tell me about the help you can get in case other parents don't know?

Mother' Basically a lot of help you can get is with money. Obviously you can get Disability Allowance for your child. If you're actually in the house caring for them you get Carers' Premium. You can apply for a number of things which helps a great deal. I mean, you can also, it depends on what kind, type of disability they actually, the child will get Mobility as well which then allows you if you can drive to get a car, to be able to take them places. So you do, you can get a lot of help but I would say to people that do start off like us the minute they find out that there is something wrong after the child is born even, go to the social work department [Father' Yeah] and ask them about all the help that they get because that is the people that will tell them.

They asked for their son to be sedated when he had his pacing wires removed after his operation.

And the pacers, how are they removed?

Mother' They just pull them out. [Father' Yeah] They just actually pull them [Father' Yeah] off. It only takes seconds.

Father' Yeah, I mean, it was just uncomfortable but it wasn't sore or nothing.

Mother' No it was, it was a little bit stingy [Father' Yeah] for a few seconds. We actually got him sedated a little bit because we know what he's like now. He just gets too upset because he doesn't fully understand it's not really going to hurt.

Father' He doesn't trust them, aye. [Mother' No] It's as simple as that.

Mother' So we got him sedated. He wasn't sedated, he hadn't been and had the, the solution for long enough when they took him in. But what had actually happened was after he came out they, they wire him up to a machine for a little while to check the saturations and everything, just to make sure they're OK and whilst he was sitting there, he says 'When do I have to go and get this done?' I says, 'You've had it done?' But because the sedation didn't work enough when he went in [Father' Hmm] he'd actually forgot about it after it had been done. [Father' Yeah]. So, in a sense it was, it was quite good. He'd been through it, it was a bit stingy and a bit nippy but about 5 minutes later he couldn't remember 'cos that's what the sedation's for. So he still thought he had to go through it but he had, I told him to have a look at himself and there was nothing on him so.

It took a bit of time to build up her son's confidence to be at nursery without his mum but now...

He actually got on fine. He quite enjoyed the idea that he had other children to play with because like I say he's with us all the time. His big sister's like eight years of difference so it was, it was a whole new experience. This place where there was so many toys, so many other children he got on with most of them. I mean, there are, obviously you are going to have clashes with, with some people, typical nursery but he did enjoy it. He enjoyed the stories because we, we started him from very young giving him a bedtime story so he knew about sitting and listening. He enjoyed playing with different toys that he's never seen before. As I say, the only thing, with children like that who go through those kind of things you have to build their confidence and that's basically what it is, it's confidence building. And when they're confident enough, you can leave them. So that's what I was doing the first year, I was building his confidence. And it did work because I mean the first two or three days he was like keeping a hold of my trousers. You know, he was, he was clinging and I had to go everywhere that he went but as the time went on I could get further and further away like, where I would go and sit down and it was like what he was doing, he was coming for reassurance. He knew I was sitting there, he would go away and play and then sometimes he'd come back and say 'See what I've done mum'. So it was like he was getting reassurance that, yeah, he could go and play and I would still be there until it got to the bit that I managed to eventually, I can leave him now. But you do have to build their confidence they've, they kind of lose trust in people when they go into hospital because there's that much different people roundabout them and so much stuff getting done to them that they do lose that. So you've got to be there to rebuild that. And if you can just take your time it helps, it works.