We Had a little girl seven years ago with HPE. She lived four months. We had no idea that this center existed until recently. We wish we would have know about you because we are still trying to understand what and why about this condition. We were not told anything about this condition until after Sydney was born. A chromosomes test came back normal, we were told and was under the impression that we were going to have a handicap child, but that she would still live. We did not know that she could and was still going to die until we went into delvery to have her. Please if there is any information that you can share with us to help us undertand and get through our loss we would deeply appreciate it. We think there is more to it being with in genetics in our families because we have had family members from both sides of our family that has lost babies since we lost our little girl seven years ago with similar conditions. And the doctors are saying theres nothing genetic....Help please....