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Parents of children with congenital heart disease

Interview CH03

Brief Outline: Their son was diagnosed with Tricuspid Atresia, a large VSD, ASD, small right ventricle and small pulmonary artery. Treatment: Modified BT Shunt and Atrial Septostomy at 24 hrs old. Cardiac catheters planned. Further operations planned when their child is older. Current medication: diuretics, aspirin, sytron, anti-reflux and lactulose.
Background: Baby's age at interview: 3 months old. Diagnosed during pregnancy (21 weeks). Parents marital status: married. Occupation: Mother-Market Research Adviser, Father-Accountant. No other children. The family live close to a specialist hospital.

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She chose a natural birth because she felt it was the one thing she could do to help her baby.

She chose a natural birth because she felt it was the one thing she could do to help her baby.

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I was transferred to a different hospital and I was very lucky in that the obstetrician was very much wanting me to, wherever possible, have as a normal a pregnancy as possible and as normal a delivery as possible in terms of, you know, I wasn't to be any different to anyone else. Which I think was very good for me. I know that some people in these instances with an antenatal diagnosis end up having caesareans and, you know, if that worked for them that's great but for me it worked being, being told in other ways it was a normal pregnancy and that was really helpful. 

I tried to have as natural a labour as possible because even though I'd been told that there was no reason that it should be any different to any other birth I sort of wanted him to have every chance possible and try and, you know, get him moving as quickly as possible and, and so on, so that was again, that was one of the things that I felt I could do myself, I could control.  I knew that once he was born I couldn't control anything but that was one thing that I could do something almost for him so, you know, try not to interfere with drugs and bits and pieces.  

 

Is glad that they discovered her son's complex heart condition during pregnancy, as it meant that...

Is glad that they discovered her son's complex heart condition during pregnancy, as it meant that...

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I think it, if it is an antenatal diagnosis what my emotions were at first were I didn't want to know. I didn't want to have been told this piece of information because that then gave me a decision to make that I didn't want to have to make but with hindsight that antenatal diagnosis actually saved his life.  If he hadn't had that diagnosis he would have been born at a different hospital where they didn't have any paediatric support at all. So, you know, it just would have been horrible and because he was, he was that unstable in an intensive care environment without any support at all I don't know what would have happened. So I think in terms of advice to somebody who's had an antenatal diagnosis, it, it's absolutely horrible at the time but it is the best thing to know because then that gives you the time to prepare emotionally but really importantly it means that the right medical support is on hand for your baby the minute that they're born. And they're monitored from the minute that they're born which gives them the best possible chance in life. 

 

Explains that it was difficult to know what to tell work colleagues when they were in hospital...

Explains that it was difficult to know what to tell work colleagues when they were in hospital...

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Since we've been home it's been great because we've been into work a couple of times to visit and everyone's really, really friendly and really pleased to see him, pleased to see me and so on. But it was difficult when he was in hospital and when we didn't really know what was going on in terms of people who aren't involved will ask you things like 'So, how long's he going to be there?' And the problem is that nobody can tell you that. Because when a baby, especially, you know, a newborn baby's critically ill like that nobody can give you the answers.  

And to explain that to someone else sometimes is quite difficult. If they say, 'So, you know, what's wrong with him?' or 'Why can't he come off the ventilator?', all those questions that it's like we can't answer those and the consultants at the moment, at certain times they couldn't answer those questions either.

So it's been, since we've been home it's been great and they've been, everybody's been, been great and, they were supportive in their own way when we were still in hospital but it's very difficult for people who aren't directly involved to know what things to ask and how to react and so on.

So your not just dealing with your baby and your own emotions, there's also everybody else?

Yeah, that's right, yeah. And sometimes that's as hard for you as it is for them. They don't know how to react to what you're telling them. You don't know what to tell them because you know that they're not going to know how to react to what you're saying. So in some cases you just won't tell people until a little bit later on and you just like leave them, no news for a while because you just can't deal with the other emotions as well as your own.

 

Describes the benefits of talking to other parents.

Describes the benefits of talking to other parents.

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And I mentioned earlier on the idea of meeting or talking to parents who've been through what you've been through but have come out the other side, I think's really, really important because then they can give you some sort of hope that it is, you know, it, it got better for them. They can't tell you anything about whether it's going to work for you or not because nobody can but they can tell you that for them it, they had some real ups and downs, the same as you're going through. But they did get out and they did get home. And I mean there are plenty of times for us that we thought, you know, 'Are we ever going to get out of here? Are we ever going to get to take him home or not?' And so to, to talk to people who'd been in that intensive care environment and had the serious, you know, the real, major surgery so soon it sort of, it did help. 

 

Describes the benefits of going on a charity open day and meeting people who had experience of...

Describes the benefits of going on a charity open day and meeting people who had experience of...

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And one thing that we did which was really helpful to us was that we went on a charity open day. Again it was Left Heart Matters even though it turned out that [my son] didn't have Left Heart Hypoplasia and we went on, on their open day and what we found really, really helpful was that at that event there were people who had been through what we were going through but had come out the other side and they could look back on it. Whereas when you're actually in the hospital environment all the other parents are going through the same as you at the same time so nobody can actually sort of say 'We got through that and we can look back and say 'It was horrible' but look at what we've got now'.  

So that's something that I'd say was really important to us, was to actually meet parents who'd been through what we'd gone through but had come out the other side and had like a little toddler running round or even a young child running round. So that was really a very important thing.

 

 

Explains that strangers made comments about her baby's NG tube which she sometimes found upsetting.

Explains that strangers made comments about her baby's NG tube which she sometimes found upsetting.

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So that is quite difficult and it's one of the more obvious external things. So when we're out and about shopping and things people quite often will remark on, on the fact that he's got a tube. I mean people sometimes say the, the worst things you know, 'What happened to him then?' I say well 'He had a fight with a cardiac surgeon?' You know, or things like, 'So what's wrong with him?' And it's just like, it's because of that external sign that's the thing that people notice.

How do you feel when that happens?

It depends on kind of the mood I'm in at the time. If I'm a bit down then it, it's quite upsetting. Otherwise I just sort of, you know, sometimes I tell them, sometimes I don't. Sometimes just sort of, you know, say 'Oh it's just for feeding' and don't' tell them any more than that. Sometimes I'll just say he's got problems with his heart or something. And it just depends on what mood I'm in or you know what people, what, what sort of impression people give me as well. 'Because sometimes I just think it's people being nosey whereas if it's people that do seem like they actually, you know, they actually care then, yeah, you might tell them a bit more.

But I do think it's strange that people will ask because it's sort of like 'Well, you know, if I tell you this information, what are you going to do with that piece of information?  What, what are you going to say to me?' You can't say 'Oh well I'm sorry' because you don't even know me, you're just somebody on the street. 

 

They designed a chart to record when they had given medicine to their newborn baby.

They designed a chart to record when they had given medicine to their newborn baby.

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I think once you get into a routine and once you sort of get disciplined to do it, it's fine. At first it's quite difficult because you think 'Oh crikey, when do I give him the next lot?' and it's, it's quite hard to get into that routine while once your in it it's OK. And you know that's why we did ourselves a little chart that we tick off when we've done things and especially when there's two of you looking after him, say at weekends, it's like you know, have you done the morning drugs or have you done the afternoon drugs, it's quite a good way of doing things. And the other thing is that when sometimes when he has a hospital review or we've gone in because there's some sort of problem then some of the medication'll be changed and so it's quite hard to, you know, to remember the new dosage or the different, you know, the different sort number of times in a day to give things. But knowing that that's absolutely crucial for him, that you give him the medication sort or, that makes you think 'OK, right I'm going to be disciplined about this. This is how we're going to do it'. And so we associate it with his feeding times. That's out way of, of doing it 'cos he has quite regimented feeding times so we sort of put the medication with that. 

 

Have taken their baby back to the hospital when they had concerns about symptoms.

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Have taken their baby back to the hospital when they had concerns about symptoms.

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So that was just a really amazing feeling actually being discharged and coming home but also really scary because while you've got the medical back up it's quite a different story to when you're at home. And they're only a phone call away but it's still quite different to compared to actually having somebody just outside the door. 

Can you explain that, how different it is?

When there's somebody just outside the door you know that you can just ask them to come and look at anything that concerns you. And particularly with, the cardiac conditions a lot of things are observation in terms of the baby's colour and their reaction and things like that. Or just asking for second opinion or something. You can just easily get that. Whereas over the phone, yes you can get a second opinion but it's not quite the same as, you know, 'Have a look at this, what do you think?'

So yeah we've been, we've been back to the hospital a few times since, since we've been home and sometimes as planned appointments sometimes its things I've just phoned up about and needed to take him back in.

What sort of things did you want to find out?  

One time he was quite puffy and I thought he had probably got a bit of fluid retention so that's one thing that we took him back in for. Another time he actually had an infected stitch on one of his scars from his surgery and another time it was his breathing that was concerning me so it's those kind of things that you know concern me over, over various periods of time and you sort of ring up and see what they think. Take him back in.
 

Fathers may feel they need to hide their feelings and be strong for their partner.

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Fathers may feel they need to hide their feelings and be strong for their partner.

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And in the initial days I think it's difficult for them because they sort of see their wife's just been through this major physical and emotional event of actually having a baby and they're trying to be strong for their wife and for this baby but actually they've got their own emotions as well. And even though they're not attached to the baby in the same way that a woman is, they still are because that's still their baby and they still have a lot of the same emotions. So I think it is very difficult for the men.  

 

 

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