Hello. At first I was reluctant to write, but I feel that it might help me to release some of my pain. My husband or I have, or our families have never heard of any condition like this until now. I went in for a routine sonogram at 36 weeks of pregnancy on November 27, 1999. That day has changed my life and lives of my family forever. Until that day, I had done tests such as the AFP test and had had sonograms, even 3 weeks prior that all turned up normal. But on that day, I was told that my child could possibly have HPE and would not be "worth" saving. That was the worst feeling I have ever felt, especially after feeling my baby grow inside me for 9 months and being told that everything was alright. It was so devastating because the doctors made me feel like our baby girl was nothing and should be thought of as nothing. Our family prayed so hard for her to be here (I had just had a son on February 2, 1999 and our families have nothing but boys) so the thought of them treating her like nothing made me want to die. They are not sure to what degree of HPE she has (I had to research on my own to find out it can range from mild to severe). They only told me she has a normal size haed, a cleft, close set eyes, and they were not sure about her nose. They wanted me to let them draw blood from the umbilical cord, which they said could possibly kill her. My family and I decided to have them take her by c-section, although the docotrs say it is a waste. But in our eyes, they will never truly know what is wrong until she is here and we want her to have every chance possible to live, whether she's nothing in there eyes or not--she's ours. @--->--- Anyone with any suggestions, comment, or info can email us at lccollin@wam.umd.edu