Interview CH02
Age at interview: 7
Brief Outline: Thomas was diagnosed with Tricuspid Atresia, Transposition of the Great Arteries and Coarctation of the Aorta. Treatment: An arterial switch operation at 36 hrs old followed by a BT shunt at 5 months, a Kawashima at 33 months and a Fontan at age 7. Current medication: wafarin.
Background: Diagnosed during pregnancy (18 weeks). Parents' marital status: Separated. Occupation: Mother-Full time Mum. No other children. The family do not live close to a specialist hospital.
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Explain that quality of life was an important factor in their decision to proceed with her...
Explain that quality of life was an important factor in their decision to proceed with her...
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And my husband and I both felt that if our baby had a good chance of having a reasonably good quality of life, a normal life then we really had no choice. We continued with the pregnancy. Which is what we did.
She didn't bond with her baby during pregnancy because she was afraid she would lose him and...
She didn't bond with her baby during pregnancy because she was afraid she would lose him and...
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So, and as I say for me, I didn't really bond with my baby at all before he was born because I was afraid to because I was afraid that I was going to lose him. So I just didn't want to feel that I was getting too attached to him. Which is a terrible, a terrible situation to be in. People who've said to me since, 'Oh wasn't it marvellous that he was diagnosed in utero so that you knew before he was born and, yes, for his sake it was marvellous because the doctors were prepared for him. As soon as he was born he was taken to the special care baby unit and monitored and kept in the incubator and that made him, that may well have helped for, for his, for the future for him. Sometime babies don't get diagnosed straight away and they can lose precious, precious time. But for me, I wish I hadn't known. I wish I'd had a blissful ignorant pregnancy and really been able to get attached to my baby before he was born.
Describes the combination of follow-up care that is available for her seven year old son.
Describes the combination of follow-up care that is available for her seven year old son.
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We also started seeing, because we lived so far away from the hospital, we started having 6 monthly visits to the paediatrician at our local district hospital, just to keep him in touch with what was gong on with Thomas so that if Thomas were admitted to the local hospital at any time they would have a complete, the up to date picture of what was going on with him. And we still do that now.
Explains how she became more involved in her baby's care when he moved to the ward.
Explains how she became more involved in her baby's care when he moved to the ward.
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The nurses were wonderful and they'd spent a lot of time with you but obviously they had, they had the other babies and parents to care for as well. So it was quite a, it was quite a, quite a sea change that was, coming back from Intensive Care back to the ward again.
She found it difficult to cope when she brought her baby home from hospital.
She found it difficult to cope when she brought her baby home from hospital.
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I also, I had a wonderful Health Visitor who was very supportive. We were also lucky enough to have a paediatric district nurse who came out and checked on the baby, took his, monitored his stats and was also a great support for me as well. So we were very, very lucky to have her. My GP, she was also wonderful. But having said that I did feel very, very alone when, when I first went home from hospital and I found it hard to cope.
And I thought that well, things will get better as time goes but actually things didn't get better, I found it harder and harder to cope. Looking back now I realise that I hadn't, I hadn't bonded with the baby before he was born. I hadn't expected to bring him home, it was a real shock when I did. And it was almost as if he didn't belong to me as if he was just somebody else's baby who had been dumped on me who I had to look after. He just didn't feel like my child at all.
When her son was a baby he was late to reach all his milestones but there had been no long term...
When her son was a baby he was late to reach all his milestones but there had been no long term...
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And this was always the way. He was late to sit up, he was late to walk, he was late to crawl, everything. Everything was late. And I convinced myself that there was something dreadfully wrong. I went through the, 'Oh he's, he's dyslexic, he's autistic'. I, I put myself through, through agonies convinced that he's got brain damage from the operation. I was convinced something was wrong. As it turned out nothing's wrong, he a, he's a perfectly wonderful, normal, bright boy and he's doing wonderfully well at school. And so I put myself through all those agonies for nothing.
He's form captain for his class for this year, which is really nice, gives him a bit of responsibility. The teachers say he's doing really well. He keeps up well with his school work. He's a bright boy and he's very happy. He's got, he's got good friends and he enjoys school, which is wonderful.