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Parents of children with congenital heart diseaseArrow
Child aged 4-5
Interview CH26  

Interview CH26

Age at Interview: 5
Age at Diagnosis: 2
Background: Parents marital status: separated. Occupation: M-Nursery Manager, F-Recruitment Officer. Other children: one older child. The family do not live close by to a specialist hospital.
Brief outline:Her daughter was diagnosed with Partial Ventricular Septal Defect after GP noticed a heart murmur when she was two. Treatment: open heart surgery to repair hole and mend the valve at 2½ yrs old. Pacemaker fitted 5 days after surgery. Possibility of further surgery in the future. Current medication: none.


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Parents concern when they are told that an expected procedure (catheterisation) will not take place.

 



Then a few weeks went, a few weeks went, passed and we got a letter in saying that the specialist was going to come and meet us up in [our home town]. But there would be no catheterisation test done and I think I was really angry then because I had been told by the first doctor that this would be carried out next. This would be the next thing. But after, since found out that really the defect that [my daughter] had, it wasn't really any need for it.  

But I think when somebody tells you something and you grasp on to that and you think, that's the next thing that's going to happen. So when we're told that wasn't going to happen, I was devastated really. Everybody kept on saying you really don't want to put her through that, but I wanted it done because I was scared that something was being missed out or you know, they wouldn't pick up on something and I was just so frightened that it if it wasn't done, I wouldn't get the full extent of what was wrong. So I think it, it took reassurance from speaking to the specialist that, you know, for her to say, 'No look there's no need for this test to be done'.  But between getting the letter and seeing her it was quite a, time really because I really was, I was frantic really, 'cos I couldn't understand why they're now, they're were now saying no it doesn't need to be done.
Parents of children with congenital heart disease
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