My name is Michael and my wife is Emily. When we found out that our first born daughter would have HPE it broke our hearts. We tried to find out as much info as we could, although there was not much available. All the doctors told us was that the outcome was not good, and she would most likely not survive. We still held on to hope that we would at least get to see this sweet angel and hold her. We had an MRI done and found out she had the most severe form [alobar.] The doctor was very honest and told us if she lived through birth our little girl would only live a couple hours. We decided to call her Lilly Elizabeth. On October 17th my wife was enduced 3 weeks early. After a 18 hour labor the doctor told us we would have to do a C-section. We were both scared and knew it was the only option. At 5:10 A.M on October 18th Lilly was born and she was not making much of an effort to breath, I took her over to mom and she started talking to Lilly, she then began to breath better, and fight. We feel truly blessed to have this sweet angel in our lives. She is now three weeks old and has amazed everyone. Each day is a constant struggle because she does not like to be put down just held and rocked. she has a partial Cleft Pallate and underdeveloped nose. We feed her with a syringe and have decided not to take any drastic measures to prolong her life, except oxygen. We dont know what the future holds, but truly feel it is gods will. For anyone out there who needs someone to talk to or have any more info for us, I have included our address god bless you all. Michael michaelgourley21@hotmail.com