Hello, our daughter, Sophia was diagonosed with HPE during one of my sonograms. We were told to terminate the pregnancy because the chances of Sophia living a "normal" life or even surviving were very slim and she would be in a vegetable state. She was born 12/11/03 and she is a very active baby, she does have a cleft palate and her right ear was missing. She is a slow feeder so they put a G-tube to feed her. She also has a VP shunt because she also has hydrocephelus. She is a beautiful child and a miracle from GOD. It is not always easy and we don't get much sleep at times...but we hang in there and just pray for strength. Please feel free to e-mail us with any questions. It will get easier and our baby has already proven many doctors by just being here.