My name is Shelley and my financee' Richard and I are expecting a baby girl August 22nd, 2000. We have found out that our baby girl, appropriately named Savannah Faith, will be born with HPE. She already is confirmed to have the cleftlip and palate and midline facial problems, and maybe missing some of her nose. She also has a small head. The scan did show that she has 2 lobes of her brain so the fetal specialist has told us that she will most likely have Lobar HPE. I have been researching this as much as I can , but haven't found much. Please let me know if you have an information about this. Please email me at shelley@netpluscom.com if you like. thanks

Update: Savannha Faith was born July 11th, 2000 with Alobar HPE. We are currently dealing with seizures, body temporature control and diabetes insipidus. We are from Ohio and desperately are trying to find families in Ohio to meet. Savannah overall is doing well, considering. You can check out her homepage to see her and her journal. Go to http://MySavannah.homestead.com/
savannah.html to see her and her journal. You can email me anytime at shelley@netpluscom.com. God Bless.