I don't know if you are familiar with the Congenital Heart Information Network, but it could be a good resource. Go to www.tchin.org. I am not yet a member, but am considering it. I believe there is an annual fee. Dr. Bove is on the advisory panel. He is a surgeon at UM. He is well-known for his expertise with HLHS. He is not Joshua's surgeon.
I went to this website before Christmas and had them send me brochures about congenital heart defect awareness week (February 7-14). I also had them send me stickers, both free of charge. You may want to check it out. :)