Hi Samsmum,
I am finding this a little late and sure hopr you are still around. I started a support group for this on yahoo. We have a few ladies from Australia who have had treatment for this. It is not as rare as you would think. Every year more and more people deal with this condition. I have it myself and my first son Chris born in Sept 2000 had massive intercranial bleeds and brain damage from it. He is the joy of our lives despite the challenges he faces. I have a second son named Jason born in May 2008 who is ok because of treatment during my pregnancy. So please let me know if you are still around. I would love to help you
Steph