Date: Tue, 5 Mar 2002 19:27:02 Here's my story: We knew nothing of Izaiah's problems until he was born. I had a routine ultrasound @ 18 weeks and everything looked fine except that he was small but this wasn't reason for concern. My pregnancy was pretty miserable-I threw up almost everyday and we contributed my low weight gain to that. (I only gained 16 pounds). On August 28, 2001, I went to my OB for a routine monthly appointment and the baby still wasn't growing. Also, he hadn't been as active as he should have been and this alarmed the doctor. When they tested my urine, they found out that I had developed toxemia and my blood pressure was dangerously high, so the doctor decided to induce. I was @ 36 weeks gestation. When I arrived at the hospital, they performed stress tests and ultrasounds, and due to low response, sent me to a major hospital with a NICU. At 7:06 that evening Izaiah James Carpenter came into the world via emergency c-section weighing 3 lbs 5 oz. He wasn't breathing and his apgars were 1, 4, 6. The doctor told me he had a cleft palate, he was turned in at the shoulders and hips, and he had facial characteristics common of a syndrome. Then he left-and I didn't even get to hold my baby before he was whisked to the NICU. They told us the next day his brain was not functional for survival. They were wrong-about a lot. He has no syndrome-his chromosomes are fine. He does have a small cleft in his soft palate-but no facial abnormalities. He is not turned in at the shoulders or hips-but does have a left clubfoot that casting and shoes have corrected. And his brain is VERY functional for survival. Once the MRI was done(@ 3 weeks) they discovered his Corpus Callosum was underdeveloped, but he had all 4 hemispheres of his brain-and they were divided. They gave him the diagnosis of Partial agenesis of the corpus callosum and HPE variant. He is 6 mths old now and doing very well. He rolled over at 2 mths, can hold his head up, can sit w/ support and LOVES to stand in your lap. He laughs and smiles and has just begun to play w/ light up toys. His biggest delay at this time is his visual tracking and making eye contact, but he recieves Early Intervention once a week and seems to be improving. He also recieves PT once a week to help stimulate his leg and foot muscles. I'm beginning to think maybe he was misdiagnosed w/ HPE because no one else has a child w/ this form. If anyone has a similar diagnosis I would love to hear from you (Izaiahmom@msn.com). My heart goes out to all of you wonderful parents of these beautiful children and I will continue to keep all of you in my prayers.