Interview CH05  

Interview CH05

Age at Interview: 2
Background: Diagnosed at 6 hours old. Parents marital status: Separated. Occupation: M-Student. Other children: one older child. Family live close by to a specialist hospital.

Brief outline:Joe was diagnosed with Di-George Syndrome and Tetralogy of Fallots. Treatment: one operation at 3 weeks old, 10 months and at 18 months old. Current medication: none.


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When she was told there might be something wrong with her newborn baby she thought doctors were mistaken because she had a perfect pregnancy. After she got the diagnosis it was the blackest day of her life.

 



And he said that was actually a problem, that you know Joe's stats were quite low and he was quite blue. And to be honest with you I didn't even know what stats were, you know. And I just said what causes that, and he says "well we're not sure, it could be his lungs, it could be his heart, you know, we don't really know, but we've had to transfer him to another hospital and we've had to put him into the ITU department and, you know, we'll see what happens. And to be honest with you, I just didn't really take it in. You know I just, I was shocked really, I just wasn't expecting it because everything up until that point had been perfect. I had a perfect you know pregnancy, a perfect labour, everything was perfect, and then to be honest with you I couldn't see anything spoiling it, so I didn't take any notice really.  

And then I asked "could I go over to him" obviously, and they said "No, you've just had a section, of course you can't" and then so I just thought there's nothing serious, they don't look worried, I'm not going to worry, So I just went to sleep and basically didn't worry, and then by the morning when my morphine had worn off a bit I did start to panic then actually. You know. I think it hit me then in the morning, that then actually I think something is wrong.

To be honest with you, that day, I didn't talk to anyone. I didn't go out of my room. I was just so upset. And I was so worried and I mean when I say that was the blackest day of my life it really was. You know, I've never had a day like that before.  I was just literally pacing my room. I didn't talk to anyone or speak to anyone or anything. 

Parents of children with congenital heart disease
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