There is a support group called Little Hearts, they provide support for parents whose children have CHD (Congenital Heart Disease) it was fouded by a lady whose son has had 2 open heart surgeries and has one more to go. I participated in a charity motorcycle ride that benifited this group. I meet this lady and her son, compared zippers (scar from open heart) with her son and spoke with the foundar. Very nice people. Contact littlehearts.org for more info. They have a website that has lots of info on all types of CHD, membership is free (donations apreciated). This is very different from DS, their support is either by phone or person to person depending on were you live. They are based out of Cromwell, CT but their services are for everyone. I sure wish this type of support was available for my parents, I can only imagine what they went thru with me. Best wishes to you, Dave