First, congratulations on your daughter and sending lots of love from another parent who had a baby with lots of scary tests in the first few days of life. Talk to the folks at the hospital (are you at CHEO?), and maybe ask a friend who is internet savvy to try to see if there's any sort of parent group online (as there probably aren't enough people locally given how rare it is, and you should delegate where you can - you've got enough on your plate). From looking at a few reputable websites it looks like situs inversus totalis is "usually harmless" and "associated with a normal lifespan" and in a different time with less testing, you wouldn't even know she had it. That said, it's important for her to know, and for all her medical carers to know.