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.
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...
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...
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.
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...
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.
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.
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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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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