Interview CH01
Brief Outline: Their son was diagnosed with Hypoplastic Left Heart Syndrome. Treatment: Japanese Stage 1 Norwood at 4 days old and Stage 2 Norwood at 4 months old. Stage 3 is planned for pre-school. Heart Scan at local hospital every 3 months. Current medication: aspirin, Captopril. Monthly injection to prevent bronchial infections.
Background: Baby's age at Interview: 6 months. Diagnosed during pregnancy (20 weeks).
Parents marital status: married.
Occupation: Mother-Full time Mum, Father-Own Business.
Other children: twin brother & 2 older children.
The family do not live close to a specialist hospital.
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She found it upsetting returning to the maternity ward with only one of her twins while the other...
She found it upsetting returning to the maternity ward with only one of her twins while the other...
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She felt like she was going through a bereavement and was cut off from the contact with midwives...
She felt like she was going through a bereavement and was cut off from the contact with midwives...
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How did you feel through the rest of your pregnancy?
Very low. Still wondering what, what was going to happen at the end of it. I know I wanted to give, give it everything that I had but it was still very worrying. It's still going for the surgery after, I still didn't know if it would make it or what was going to happen. It was very unknown. And there wasn't really anyone to talk to. So, it was like basically left, left on your own to get on with it. It was very hard on all the family.
Could you say a bit more about there wasn't anybody to talk to?
Yeah, well the midwives, once, once the midwives knew they didn't, I didn't really see a midwife because they thought there'd be enough doctors and things involved and I had to keep travelling to a special hospital to have my scans. I had, I got scanned every other week and there was a lot going on but there wasn't really anyone to talk to.
When I first found out I, I felt as though I was going through a bereavement. That's, that's the only way I can describe it. It was, it was just awful. And no-one to talk to about it.
Explains that feeding by NG tube was a tiring and time consuming process.
Explains that feeding by NG tube was a tiring and time consuming process.
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So does it, does it have a stand?
No. We just used to have to hold it yourself, yeah.
So you really are restricted in what else you can do?
Yes, yeah, when you're feeding him, that's it. You know, yeah.
And how often was he getting fed?
Every three hours.
And it was taking an hour at a time? And you had the other twin as well. You must have spent most of your days just feeding?
Yeah, yeah.
Yes, the hospital were very good, yes. And before you give him a feed you have to check the stomach contents. You have to draw out with a syringe and test it on litmus paper to make sure that his tube is still in his stomach because if he moves around it could go higher up or lower down. And a couple of times we weren't getting anything. The paper wasn't going pink, it was supposed to turn pink. And it wasn't going pink so we'd have to take him up to the hospital and they would just move the tube around a bit until they got it pink. Every time it was learning, yes. And sometimes he would pull the tube out himself, so we'd have to go up again and they'd put the tube in for us.
To the local hospital?
Yes, yes.
Describes fear that siblings would feel neglected when their parents were spending time at the...
Describes fear that siblings would feel neglected when their parents were spending time at the...
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So they have reacted in quite different ways?
Yes, yes, yeah. They love him to bits though now.
Do you think it's had any affect on them, you know, this attention being focused on him?
I think it did at first, it was hard at first 'cos obviously I'd been away from the home a long time and my husband was, and when I was in hospital still expecting, 'cos I was there for 4 weeks, my husband was coming every day to come and visit and obviously they found that hard 'cos it was just my mum here. I did, I do feel that they felt a bit left out. But we made up for it when we got back, yeah. We let them know we weren't on holiday having a nice time.
And do you think that's what they thought?
I think so, yeah, yeah. They didn't really know where we were, you know, what we were doing. Yeah. 'Cos, luckily we've never had to go to hospitals as such before. They've never really seen hospitals or had to go to them.