Re:hemangiomas & Phaces syndrome
Hi! My son was diagnosed in February 2004 with PHACES. He was born in June, 2003. Luckily, our pediatrician has not found any problems with his heart, though we have not had any special tests done for that. He has a Dandy-Walker Malformation on the left side of his brain, and his hemangioma covers the left side of his head, his entire left ear, and below his left eye. We have been lucky with that too, as the hemangioma did not seem to affect his vision.
Well, I just joined the discussion board. From what I understand, PHACES is not common in males, so I was interested to read your post.
Best wishes to you and your son.