Interview AN45

Brief Outline:

Their son was diagnosed with a complete Atrioventricular Septal Defect (AVSD), pulmonary atresia and right atrial isomerism. Other problems' No spleen and mal-rotation of the gut. Treatment' A BT shunt at 24 hrs old, followed by the Glenn procedure at 6 months. More of this interview can be seen on the Congenital Heart Disease site as interview CHD14.

Background:

Diagnosed during pregnancy (22 weeks). Parents marital status' single. Occupation: Full time mum. Other children: A twin brother and one older child. The family live close by to a specialist hospital.

The hospital advised against meeting parents of babies with Down’s syndrome. She did not get in touch with support groups.

I did look into the Down's syndrome side of things, a lot of leaflets, and sort of got in touch with various, I think the Down's Association I got in touch with. But that was quite difficult, I found, because I actually spoke to the hospital and I asked if I could speak to somebody that had a Down's baby, and they didn't feel that it wouldn't be beneficial. And at the time I was a bit sort of, 'Well, I don't understand that'. But in hindsight now, I can understand it a bit more.  

And so I did look into that quite a bit, but mainly leaflets really. The hospital gave me a lot of leaflets on congenital heart disease and so I did read up on bits of that. But I must admit I didn't actually contact any organisations. I didn't actually physically speak to anybody. At the time I don't think I wanted to - I did and I didn't. 

I think maybe if somebody had contacted me, I'd have probably quite happily chatted away and asked them lots of questions, but at the time I didn't feel possibly strong enough or confident enough to actually contact them.