Hi. My name is Dianne and I have a wonderful child who has HPE. I was thrilled to read all of the stories on this website and felt compelled to share our story too. When I was pregnant with my second set of twins (yes, you read that right!) one of my babies was diagnosed with Holoprosencephaly with secondary Hydrocephalus.(at 16 weeks-routine sono) She was my only girl. There was only a small ring of brain tissue in her large head and the rest of her head was filled with fluid. Worst still, I was told she would probably die in utero but I would have to continue to carry her until her twin brother was ready to be born safely. This was a terrifying and somewhat morbid thought. I didn't want her to ever leave my body. I wanted to care for her forever. She would be safe there. But, I was nervous about how I would feel carrying a deceased baby for what might be months, next to a healthy growing baby. As the months dragged on the diagnosis changed at each sono, which was even more agonizing, but the prognosis did not.(Did these docs know what they were talking about?) IF she lived long enough to be born, she might die in labor or moments after. We put it on hospital record that we wanted no heroic measures, we paid for her funeral and picked out a plot in a baby cemetery. After months of emotional torture in bedrest prison, I began having contractions that I believed weren't going to be stopped by meds like the others had. Even if they were stoppable, I wasn't going to let it happen. Emotionally I was ready to let her go that day, and I wanted my healthy son in my arms where his soft, warm little body could help mend my broken heart. At 34 weeks, on September 23, 2000 I was C-sectioned after it was determined that labor wasn't stopping. My baby girl was lifted out first. She had a swollen head, but looked like a carbon copy of one of my older twins.(no facial anomalies) She was alive. Caleb came 1 minute later, looking like the other older boy. They rushed them across the room to teams of people who worked on them for what seemed like 3 hours. She needed no oxygen. She was breathing. She never cried, because she was too busy fighting to prove everyone wrong! Initially we were elated that we might have a few hours, even days with her. This was more than we'd dared to hope for. Then she kept living and we started to panic. Why was she living? What kind of life could she possibly have? How would we care for her and all her special needs (whatever those would be) with 3 other children under the age of four at home? I couldn't do this!! She was shunted at 1 week and her head went through a huge transformation. It was much smaller but the plates and bones were forming in odd shapes. She ate most of her feedings through an NG tube in her nose, but would take some from a bottle. We took her home when she was a month old on her daddy's birthday, still unsure of what we'd do to survive, but happy to have our kids all under the same roof finally. Corinne has been through a lot but not as much as some others I've read about. She has no other complications like DI or tight muscle problems. I hope it stays that way. We gavaged her the part of her feedings that she wouldn't finish by mouth through her NG tube for 8 months. We'd been stubborn about not getting a G-tube. We just knew we could get her to do it all by mouth eventually. We broke down and had a button put in at 8 months and naturally she started taking all of her feedings by mouth 3 weeks later. This has always been Corinne's way. She gets a huge kick out of proving everyone wrong! We've not had it removed in the event that she might get sick or weak and need to be tube fed. Recently we had a CT scan for the first time since before her shunt placement. As this website suggests, it is not a good idea for diagnoses to be made pre-shunt. That is exactly what happened. They diagnosed her with a head full of fluid. Then, even though I pushed for another CT or an MRI to be done several months after the shunt, the doctors said it would be a waste of time. That little ring of brain tissue was all she had, they said. Guess what? Her CT last month revealed about 4 times as much gray matter! Not a complete brain, but a LOT MORE! Our second miracle! We don't know what this means yet-maybe she is lobar instead of semilobar. It doesn't change her, but as many parents know, it is helpful to be able to correctly label the disorder. Corinne and her twin, Caleb will celebrate their 1st birthday in a few weeks and it's unbelievable to me that she's still here! It's still hard to talk about her future too far in advance-I get nervous when people talk like that. Her big brothers call her Corny (they couldn't say Corinne in the beginning) or Candy Corn, and they give her constant love. She can smile, laugh, say mama and dada (although at 11 months I don't think she knows what they mean!), and she can roll over. She is my easiest kid-not irritable or difficult like they said she'd be. She cannot sit up yet because we are still working on head control and upper body strength. She is taking all 7 ounces of her bottles like a champ and is taking some baby food. She gets OT, PT and Physical therapy from the Capper Foundation, a wonderful WONDERFUL local organization for disabled children. With their early intervention she's done things we never thought she'd do. I can't stress enough how important early intervention is! Corinne has given us gifts and has allowed us to meet amazing people we never would've dreamed existed in the world. If you are reading this you're probably one of them, and I'd love to hear from you. If anyone has a child like Corinne or has questions for me I would certainly welcome their correspondence. Thank you! Dianne and Corny!