Connie
Hi! I just read your post and wanted to tell you that my oldest son was born with this also. His was considered moderate and was down about 1/3 of the way from the tip. He was 2 1/2 when they did the repair and then they had to go back when he was 8 to enlarge the skin that they used to repair it (he grew and the skin tighten and made the opening small). He is now almost 20 and is doing just fine. Connie