My story is quite long since it consists of two of my children being born with Hpe.I will try to be as brief as possible. Jeremy was my first baby.At my seventh month of pregnancy, after having a sonogram, I was told that I would not have the healthy baby that I expected.He was diagnosed with a-lobar hpe.He was born full term on 12/31/86.Jeremy was on a breathing tube and I was told that if they took it out he would not survive.Well he "pushed" it out and survived.Jeremy had severe seizures and was on a feeding tube.He never came home from the hospital.He stayed at the hospital where he was born for five months then was moved to a hospital in N.Y.C where he died at 11 months.The call came in the middle of the night.The doctor said that for Jeremy`s heart rate started to drop at around 10 pm(it was now 1 am.)By the time we got into the hospital my son had passed away.As I leaned down to kiss my son good-bye I told him it`s ok now you are in a place where you will have no more pain. Genetic tests were done and I was told it was a sporadic incident, a "freak" accident.That it would never happen again.I was already pregnant with my second child when Jeremy passed away, only I didn`t know it.I continued to have Genetic counseling with each of my pregnancies.I had two daughters and a son that were perfectly healthy when I got pregnant with my daughter Daisha. Now for Daisha`s story.Eight years after my son Jeremy was born I was now pregnant with Daisha.Now married to a different man hpe was barely a thought in my mind.In my fifth month of pregnancy I had a sonogram and was told that the left ventricle looked a little enlarged,I should`ve known right then, but I didn`t want to believe it.Once again the genetic counselors were called in. I started going for stress tests 2 x a week.Expressing my concerns to the specialist about my previous history I was told "this baby does not have hpe." I was later told by the neuroligist that there was no way it couldn`t have been detected.The specialist also said that he had never seen a baby with a head size this close to normal be born and not be normal. My precious daughter Daisha was born full term on 5/22/94.She was born with a slight cleft/palate.For this reason and my previous history the doctors did an MRI which concluded that my beautiful little girl had semi-lobar hpe.I will never forget the moment that the doctor came in and told us. That word hpe. I thought this cannot be happening to me again.God why? The doctors told us she would not live past one year.They basically told us to take our baby home and wait for her to die.Which to be honest I hoped for at first.Remembering the pain and suffering that Jeremy went through, I did not want to see my daughter go through the same. At 5 weeks of age Daisha got a cold. Then one night she refused to drink her bottle.I brought her into the hospital the following day, and she stopped breathing. Her sugar level was down to 20(it should be up around 90), they said it was a miracle that she wasn`t in a coma.Daisha had acute kidney failure, her liver was shocked and they thought she would not make it.I was now praying to God to please let my baby live.If I could just see her smile at me once more.Well Daisha pulled through, but she was in and out of the hospital most of the summer. The doctors were having a hard time stabilizing her electrolytes.Daisha was then diagnosed with diabetes Incipidus and was put on DDAVP, which she is still on to this date.She had one seizure in the hospital which happened because they brought her sodium level down too fast.No more seizures since then. It has been almost 4 years now since Daisha has been hospitalized.Her doctors finally told us that she has surprised them.She is a beautiful little girl who is extremely happy most of the time.Daisha will be 7 yrs. old on May 22 nd 2001.She is truly a miracle!Everytime she looks up at me with her big blue eyes and smiles at me I thank God for each and everyday that we have with her. Daisha still does not sleep through the night.She eats stage one and two baby food, which is spoon fed to her.She weighs 30 lbs. and she is in a wheelchair.Daisha will be having surgery soon to legthen the hamstrings behind her knees and in her groin area. Then she will have a cast on both of her legs for 6 weeks. I pray to God that she will make it through the surgery ok. So to all of you parents with children that have hpe,don`t always believe what the doctor`s tell you. Take it one day at a time. I know how difficult it can be. I am very thankful that I found this website, I`ve been looking for a long time to find other parents that have children with hpe. so I could see how old their children are and maybe learn new ways that might help me deal with my daughter.