Interview AN43

Brief Outline:

Their son was diagnosed with Hypoplastic Left Ventricle, VSD, Mitral Atresia, Pulmonary Atresia, Right Atrial Isomerism, aorta arising from the right ventricle, TAPVD and Bilateral Superior Vena Cava and no spleen. Treatment' modified BT shunt (6 days old) open heart surgery (3 months and 6 months), 1st stage Fontan (10 months). Further surgery planned. Current medication' Warfarin, Enanapril, Frusemide, Penicillin. More of this interview can be seen on the Congenital Heart Disease site as interview CHD07.

Background:

Diagnosed during pregnancy (32 weeks). Parents marital status: Married. Occupation: Mother-Civil Servant, Father-Police Officer. Other children: Two older children and a younger sister. The family live close by to a specialist hospital.

They had made it clear they wanted to continue the pregnancy, and were offended that termination was offered as an option.

Father' We may be right, we may be wrong, but we felt that they were only looking to operate on babies that had the best chances. And that was one of the main reasons why we went to the hospital that we went to'..

The three offers at the other hospital were one, proceed with the pregnancy and the baby's born and they don't do anything, and basically it meant that with his condition he would have died within a couple of weeks. Two, he was born and we do this surgery. Or three, they actually offered to terminate there and then'..

And there's probably no relevance to his condition but we'd already lost a boy only 18 months earlier who was stillborn at roughly the same time, 8 months' pregnancy and to be told, you know, to terminate there and then we didn't feel there was...

Mother' I mean, I wouldn't judge anybody on making that decision but I personally found it offensive, because the reason we'd sought a second opinion, and we'd made it very clear in advance of going, was because we decided that we wanted to proceed whatever the outlook and give him the best possible chance, and that was why we'd bothered to go all that way for a second opinion.  

So in our particular case I didn't think it was even appropriate to ask the question. Whereas for another family that might have been just what they wanted and, you know, it would have perhaps been right for somebody else but I don't feel in our circumstances that I'd have felt happier if they hadn't even broached that with us.
 

She was glad they discovered their son’s heart condition late in pregnancy, so they had less time to worry.

When he was diagnosed, how many weeks pregnant were you?

About 30, 32 weeks. And for some people finding out that late on would perhaps have been a bad thing, but we actually felt, in one respect, that it was better that it wasn't picked up earlier because we had sort of 6 weeks of worry, as opposed to, you know, the whole pregnancy. 

And once he was diagnosed the cardiologist was very informative about the condition that he had and what both the short term and the long term outlook was. And that, well, the outlook was quite negative really, but I felt that that was good that they gave you an honest view, in that anything sort of after that was a bonus really. 

And I mean, he's done better than we ever could have imagined. And I think that it was good that they were honest, although it's hard to accept at the time. So to give somebody false hope, you know, would have been worse really.