Our beautiful son Edward came into this world on February 13, 2001. He will soon be celebrating his first birthday... a day neither one of us thought we would ever experience. When I was 20 weeks pregnant I went for a routine sonogram for the sole purpose of determining the sex of our baby. In fact, my obstetrician warned me that our insurance company might not pay for the cost of the test since he could not in good faith place a medical reason in the chart for ordering a sonogram at this point in the pregnancy. Everything was progressing normally...we heard the baby's hearbeat at 10 weeks. Edward is my second son, he shares his life with our son Max, age 2 1/2. My pregnancy with Max was a nightmare: I was horribly six, on complete bedrest for 4 1/2 months. In contrast, Edward was a dream in utero...no nausea, etc..I felt great. I knew something was wrong when the sonogram technician kept going over and over my baby's head. She tried to keep her voice calm, but I knew something was terribly wrong. She told me that she was having a hard time "finding the anatomy" of the brain. I had told my husband that I would be fine going to this appointment by myself with Max in tow...after all, it was only to satisfy our curiosity about the sex. The next thing I knew, I was sent upstairs to the perinatoligist's office for a level two sonogram and was trying to remember my husband's cell phone number as the nurse said he should be called "immediately." Thank God for the kind soul who managed to find my starving toddler a cracker and some juice as I was all but useless lying on an exam table signing consent forms for amniocentesis feeling like my world was unraveling before my eyes. When my husband arrived, the perinatoligist explained our son had alobar HPE and would most likely not survive to term. He had us make an apppointment with a genetic counselor who very pointedly but kindly explained our son had a lethal anomaly and strongly urged us to consider terminating the pregnancy. We were in agony...our hearts were breaking. Needless to say, we chose to give our son life for as long as we were to be given the privilege of having him grace our world. The rest of the pregnancy was a blur...for the next five months I went through the motions and tried to keep life as normal as possible for my other son. I have to admit there were nights when Edward would not be as active as normal and I would ask God to just take him now...we had made the mistake of pulling pictures off the internet from medical textbooks that showed some of the facial abnormalities children with alobar HPE sometimes have and I would often awaken in the dead of night from a nightmare where I would dream I was carrying a "monster" inside of me. Edward was due on February 24, 2001. By the beginning of February I was starting to get emotionally weary and my OB suggested we induce early. We agreed and the induction was planned for the 13th. We had met with the hospital staff ahead of time and made our wishes known...we wanted no heroic measures, through the help of the pediatric arm of Kansas City Hospice (to whom we owe so much)we had a written DNR along with a comprehensive birthing plan in place setting forth our wishes. Our family priest was present to baptize our son immediately upon delivery. We turned the moniters off once the Pitocin drip began. Just as Edward had given me a physically painless pregnancy, his delivery was a dream...hardly any pain or effort on my part. I wanted him placed on my chest immediately...I wanted to see my son before he died. To our utter amazement we gazed into the face of an angel straight from heaven. Not only was he completely lacking any of the facial deformities we had been warned to expect, he was the most beautiful child I had ever seen...absolutely perfect from his long eyelashes to his rosebud lips. We did not expect to bring our son home from the hospital..we did. We did not expect to hold him more than a few weeks...we have had that and more. Now that he is approaching his first birthday, we see signs of obvious developmental delays. He is very hypertonic although we have yet to notice any definite seizure activity. An MRI performed one day after birth confirmed the prenatal diagnosis of alobar HPE and revealed he is missing the occiptal lobe of his brain which should mean he cannot see..Edward sees at a very functional level. He receives vision therapy through The Children's Center for The Visually Impaired and his teachers are amazed at how well he tracks and reaches for objects given his diagnosis. He recognizes my husband and I and his big brother Max. He plays peek-a-boo and squeals with delight when he "finds"you... He has very poor head control and cannot sit unassisted. He does not roll over, crawl, etc. He receives ot, pt and will begin feeding therapy in the immediate future as he has not been able to grasp the concept of swallowing baby food as of yet. He still sucks down his bottles like a trooper, though! His head size has increased rather alarmingly in the past few months and his pediatrician believes a shunt is necessary. We are having a MRI on 2/27/02 to determine fluid levels and placement. Actually, far from being frightened by this latest development, I feel so fortunate that this is really the first true medical intervention we have had to contemplate. He has never even been on an antibiotic...the most heavyduty drug to enter his little system to date has been baby Tylenol for tooth pain. Not bad for a little guy we were told would never survive the birth process and if he did would be a "vegetable" (One professional we consulted actually used that term!!!) I shudder to think what we would have missed had we not chosen to bring this miracle to earth...he is our joy. We are rational people...we do not know what the future holds for our son. But we are determined to give him the best life possible for as long as we are blessed to rock him to sleep every night and thank him for coming to us to share his life. We would very much like to hear from other families who are traveling this journey with their challenging children. You can reach us at our email address: mdover1@kc.rr.com.