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Parents of children with congenital heart diseaseArrow
Child aged 1-3
Interview CH10  

Interview CH10

Background: Age at interview: 21 months. Diagnosed during pregnancy (20 weeks). Marital status: married. Occupation: M-Health & Social Care Consultant, F-IT Consultant. Parents have one older child. Family live within 10 miles of the specialist hospital.
Brief outline:Their son was diagnosed with Transposition of the Great Arteries, ASD, VSD, Atrial Isomerism and Pulmonary Stenosis. He has Dextro cardia and Bronchial Isomerism. Treatment: none given yet, surgery planned for when their son is older. Current medication: ventolin & flixotide for asthma.


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Explains that their son who has not yet had surgery, is not able to join in with all the things he would like to. He tends to crouch when he needs to rest.

 



Mother: I think that the other thing that's a little bit more difficult as he gets older is that he, becomes much more aware and he's socialising more and he's got his little friends at nursery and that and he's got an older sister who is running around, bouncing everywhere, wants to do daredevily things with him like jump off the top bunk and stuff and he can't do it. He wants to join in and he can't do it and that's kind of him now having to deal with it.

And he's also learning to communicate as well in sort of short simple sentences and things and I think that's the thing that I'm finding quite hard is dealing with kind of you know his sadness in some ways at not being able to do some things or join in.

Father: He's pretty good though, he's not, I think he sort of realises he can't do as much and then he's fine you know if you just pick him up and make him rest he sort of realises he needs to rest. He is very good like that.

Mother: He sort of goes over into a crouching position and he does this quite a lot, when he knows he needs to rest or whatever he'll just, he'll just sort of bend down and it seems to be in either a squat position or crouching down.

Father: On the floor.
Parents of children with congenital heart disease
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