Hi my name is Christina and on April 30, 1996 I was in for the shock of my life what started out as a ultra sound to see if my baby was position for birth I was informed I needed to go to another hospital for a high power sonogram. The dr wasnt sure what was wrong he just knew the sonogram wasnt normal. Well when I had arrived at the other hospital and had the sonogram they said they werent sure they thought the baby either had dandy walkers syndrome or that he had had a stroke. They delivered my son via c-section (cut both vertical and horizontal so they could deliver him saftley) When he was delivered on May 1, 1996 my Freddie had an enceplacyle hanging off his head. My husband and I were taken into a conferance room the next day and informed that our son would be severly mentally retarded and never funtion normally. I was devestated here I was with an all ready 22 month old son who couldnt wait to getting bigger so he could play with his little brother. After a couple of days of all the dr's coming in and out of the nicu we were informed that our son had holoprosenechaly and hydrocepalus,slight hearing loss in the left ear, cortical vision and epilesy. Three and a half years later we are finally getting into a routine. Anurse comes 5 days a week for a couple of hours to help with the feeding and bathing. Freddie goes to a special school close by and receives all his services (vision, speech, ot, pt).Freddie is just now starting to hold his head up and still does not crawl or roll over. In JUne of this year Freddie had surgery to place a vegel implant to help with the seizures. So far so good 50% are gone. He is currentley on phenobarbitol. He shows no physical signs of holoprosencechaly at all just looking at him you would think he was a very bi 4 month old. If anyone has a child like Freddie and would like to speak to me. Im looking for other families who are going through sorta what my family has gone through or is going through please contact me. My email address is cmt10993@aol.com