Hi there Diana,
I have three kids and the two youngest have SWLOCAH. We go to the Royal Childrens Hospital in Brisbane although we live in Caloundra. We only found out July 2006 and were lucky as the boys were quite sick as babies.
There is a CAH support group you can join the website is www.cah.org.au and there is heaps of useful information on their website.
I have been looking for a support group in the area and to my knowledge there is not one in our area. I have thought about trying to get a group together maybe once a month in the Brisbane area??
Anyway, my email is donashelly@hotmail.com if you want to chat, I know that sometimes it is hard to speak to family and friends who really don't know what your going through although they are supportive!! I'm still learning new information all the time and till now can be hard to deal with. I know what you are going through and it will get easier for you.
Best wishes Dona.....
