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Parents of children with congenital heart disease

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 so really we were, we were just totally devastated and our first thought was that that would be the end of it, we'd have to have a termination, we wouldn't be able to carry on with the pregnancy. After that afternoon we went back to, for another scan and to see the paediatric cardiologist of the hospital who is a wonderful man. He explained to us as much as he could see, he did a scan and then he explained, as far as he could what he could see was wrong with the baby's heart and possibly other associated conditions with, problems that there could be with the heart which he couldn't see at that stage. But he gave us the whole scenario and also the worst-case scenario which as it turned out was the case for the baby. But he also explained that the surgical intervention they could do, what they would probably do at different stages throughout his life and he also explained to us the quality of life that our baby could expect to have. And that was very important to us because at that stage you are faced with the decision, 'Do you continue with the pregnancy or do you, do you terminate?'

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 felt very disconnected after the birth of her baby and found it difficult returning to the...

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She felt very disconnected after the birth of her baby and found it difficult returning to the...

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I felt very disconnected. I'd just had a baby and you have these wonderful feelings of euphoria that you have after giving birth and then laying in the maternity hospital the next day. I felt very strange as if, 'Well I've had a baby but where is he? Have I really had a baby, was it all just a dream?' It was very strange and once I was able to stagger around the ward a little bit there were all the new mums with their babies in the incubators pushing them around, having cups of coffee and I felt very, I felt as if I shouldn't be there. I really felt, I felt very strange being there.

 

She stopped telling people about her baby's heart condition during pregnancy because it would...

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She stopped telling people about her baby's heart condition during pregnancy because it would...

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Well, yeah, because once you're getting into your pregnancy it becomes obvious people are very interested, they want to know when's the baby, when's the baby due, how are you feeling. And at first I would launch into the full, into the full story and tell people all about it and how terrible it was and then I saw what a dreadful effect this was having on people. It would upset them. So after a while I just stopped telling people, I would just pretend there wasn't a problem, that everything was normal and but really inside it was, I was feeling terrible.

 

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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It was, it was appalling to be honest because I knew that, I knew that the baby did have a very serious heart defect. He was going to need surgery very quickly after he was born within the first few days of life and we also knew it was major heart surgery and there was a possibility that he wouldn't survive. And therefore I didn't really plan to have a baby from that stage on. I was so afraid that we were going to lose him and I didn't, I didn't buy any equipment and I didn't, I didn't plan, I didn't, I found it very hard to cope with and I did become very depressed. I found it hard to talk to other people about it, to have to explain it to them just made the situation seem  seem even more scary than it was. So what I think, I shut down, I shut down quite a lot for the rest of the, for the rest of the pregnancy.

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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Then we had to go back to the hospital once a month for check ups. Then they put it back to once every 3 months and then they told us we didn't have to come back for a whole year, which was, which was quite staggering and a little bit scary because I couldn't imagine not going to the hospital for a year. But we always knew that they were there at the end of a phone if we needed them and also we could go at any time if we felt it were appropriate.  

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.

 

Her son may need a heart transplant in the future but she tries not to worry about it too much...

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Her son may need a heart transplant in the future but she tries not to worry about it too much...

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As for the future, it's very, very difficult for them to tell us at the moment. The, the kind of surgery that they're doing now is so innovative that they don't have people 10 years down the line, 20 years down the line and they can say, 'Look, you know, this is what you can expect'. 

For Thomas we do know that there's a possibility that he may need a heart transplant in the future, if he doesn't thrive. What they've done now is as far as they can go with palliative surgery. If he weren't thriving then the next step would be a transplant but, to be honest we don't' worry about that too much because who knows what they'll be able to do in the next 5 or 10 years. And at the moment, he has a wonderful life and he's just like all the other children. So, what more can you ask for really?

 

They were able to claim Disability Living Allowance and Carer's Allowance which had relieved any...

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They were able to claim Disability Living Allowance and Carer's Allowance which had relieved any...

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No we were very fortunate that I didn't, I didn't need to go back to work after I'd had Thomas. My husband was able to support us quite adequate, adequately. So, no, we didn't have any financial problems. Also I was helped by, at the time we had a social worker. She was there, she was there to support families of children with special needs and disabilities and she suggested that I might like to apply for a Disability Living Allowance for Thomas. Which hadn't occurred to me but she helped me out with the dreadful forms that you have to fill out and so I applied and I was granted Disability Living Allowance for him, which I did find helpful.

After which she said to me that I should also try to claim for Carers' Allowance, which I did and I was able to claim that as well. So that relieved, that relieved any financial burden that we may have had.  I found it useful because we were having to make frequent trips to the hospital which of course is petrol and my husband did have to take time off work at which time he was doing contract work so obviously only getting paid for, for the hours that he worked. Also when you stay in hospital you do end up spending a lot of money' phone calls, food, it can become quite expensive no matter how much you can, you try to keep it under control. So yes that was, I found that, I found that useful.

 

How taking warfarin affected her son's school life.

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How taking warfarin affected her son's school life.

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He does very well at school. He's a very popular boy. He is restricted now in that he can't take part in contact sports such as football, rugby and cricket because he's taking warfarin so he has to be careful about injuries and knocks and bumps. But apart from that he takes part fully in school life. The only slight problem is that we have to go for the blood checks regularly at the hospital so sometimes he has to miss a little bit at school. And also check ups down at, down at our, our cardiac hospital. But really, yes he takes a full, a full active part in school life.

 

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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You had very dedicated care in Intensive Care. Always there was one nurse, at least one nurse continually with your child. And it felt very safe. And when we went back to the ward atmosphere it was different because we were sharing the nurses amongst the other babies and also you were a lot more involved in the care of your child. He no, he was no longer on the machines, on the drips. He just, he was attached to a nasal, a nasal-gastric tube but we then became very much more involved in their care. The nappy changing, the feeding, the cuddling.  And it was, it was very strange to me because for the first 12 days I'd just had a baby who'd. who'd lain on the bed and not done anything and it, it was very easy really. And suddenly I was thrown into, thrown into an environment of lots of babies, crying babies and my own baby that, my goodness, I had to take care of. That was very scary.

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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Well, we knew that we could phone the hospital at any time, the paediatric ward. We could phone day or night if we had, we had any problems. We were very fortunate that we only live 20 minutes away from the hospital so I also knew we could just jump in the car and go there at any point if we wanted to. And we, we frequently did.

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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His developments was always a little bit on the slow side. He was late to reach all the milestones. And I found that incredibly worrying at the time. He was my first baby, I had nothing to, I had nothing, no nothing to mark, mark the standards by and therefore I read all the books and if he wasn't doing something by the end of the, the end of the stage that they gave you I would start to worry and think something was wrong.

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.

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