Saturday, December 2, 2006

First surgical consult anxiety

I am almost 38 weeks pregnant and just had my first consult with the cardiac surgeon at our Children's hospital. It was not what we expected!

So we meet with the lead surgeon and all he talks about is how the left side is smaller, it is not clear whether it will be capable and that it is likely we will need to perform the Norwood 3-stage procedure. I pointed out that our baby appears to have a fairly good sized LV, a full size mitral valve, normal size aortic valve, no regurgitation etc etc and the LV makes the heart apex.... he says "well, we can't trust in-utero measurements, especially in this case where its 'a tweener'". A "tweener" means we fall between diagnoses. He then tells us we don't want to make the wrong choice and repair the arch if he really needs the single ventricle surgeries because he could die. I ended up feeling argumentative... commenting that the long-term outcome of the Norwood is less certain than a CoA repair, more risk etc etc - and we were then given a "sales pitch" type of speech comparing the outcomes and interval outcomes for this hospital vs those renowned for pediatric heart surgery in the US.


I finally asked him to assume we were going to have the CoA surgery and tell us about that. He just said "oh, if its only a CoA repair he'd be in and home ina few days".... and then went on to tell us how he had performed this surgery on a premie infant and although it was not without risk had never had a death. That was all we heard.

I am really anxious now and feel less at ease about delivering at all. Perhaps I will keep this little guy in here a bit longer to sort this out! I DO understand that the diagnosis is not confirmed till birth, but I had thought that will all the evidence pointing to structural problems in the arch, this would be the first surgical intervention to give the left side a chance to develop further.