leanne, sorry to hear that it's a rare condition but really glad to hear of your decision.
I'm sure bub will grow up all right, big and strong when he/she has wonderful loving parents like you. I think you will all do all right.
I remember about 6 years ago, a colleague's bub had a heart condition, I dont know which one it was, but had to have a surgery when he was born and another couple of years later. Earlier this year, another friend told me that the bub is doing really well!!
xox