Interview CH06  

Interview CH06

Background: Age at Interview: 15 months. Diagnosed during pregnancy (20 weeks). Parents marital status: married. Occupation: M-Full time Mum, F-Postman. Other children: one older child. The family live close by to a specialist hospital.

Brief outline:Their daughter was diagnosed with Hypoplastic Right Heart Syndrome, Tricuspid Valve, Coarctation of the Aorta, Transposition of the Great Arteries. Treatment: A banding operation at 22 hrs old, repeated at 1 week old. A cardiac catheter at 10 months and a CP shunt at 1 yr. Further palliative operations planned. Current medication: Phenoxybenzamine Hydrochloride.


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Advises parents to talk to health professionals and other parents about the support that is available.

 



Father: And I think at, there's an awful lot that you can do for yourselves in respect that you can, you know, you can sit and talk and help each other through things.  But at the end of the day it's people who, who are qualified.  

Mother: Hmmm 

Father: And if you need more than just your partner, I think, you know, anybody whether it be your liaison sister, the cardiac liaison sister or a nurse, even a doctor, or the cardiologist themselves, they'll all take time. If there's anything you need explaining then they'll take time to do it. They will. If they, I mean if we ever had a problem we made it clear and that, they will tell you to do that as well. Make it clear that if you're not happy with something let us know so that we can do something about it. And they are, they are very good at, at sort of leading you up the right path, if you know what I mean. I mean, there's, there's a lot of things that you, after it, like, like the DLA and forms and things that, that you could be, they could help whether it be financially or, or just, you know, help you with the development of your child. That you should, that, you know, a lot of people don't know about. I mean, we didn't know about 'em, its' just that we've been fortunate enough that we spoke to other parents who have told us. 

Parents of children with congenital heart disease
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