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Parents of children with congenital heart diseaseArrow
Child aged over 5
Interview CH02  

Interview CH02

Age at Interview: 7
Background: Diagnosed during pregnancy (18 weeks). Parents marital status: Separated. Occupations: M-Full time Mum. No other children. The family do not live close by to a specialist hospital.
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.


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Describes the combination of follow-up care that is available for her seven year old son.

 



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.
Parents of children with congenital heart disease
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