Our daughter Alanna Marie was born on July 24, 1997 during a planned C-Section. At our routine twenty-week sonogram, the doctors diagnosed massive hydrocephalus and suspected heart problems as well. Of course, we were devestated. Our biggest concern before the sonogram was whether or not we wanted to know the sex of the baby! Our obstetrician sent us to a maternal-fetal specialist who asked while I was still of the exam table if termination was an option. When we responded that it wasn't, he said" Well, Good Luck."

We made a a lot of difficult decicisions with the help of doctors and family family members. These included serial sonograms every four weeks, during which the hyrdrocephuls progressed and the heart abnormality became simply a reflection of Alanna's ribs! We waited until about 26 weeks to have an amnio so that the baby would have a chance if I went into the labor. The results were chromasonally normal. Alanna was born at 36 weeks, 8.4 pounds, with a 47 centimeter head circumference. All else appeared normal.

Alanna was shunted immediately and responded well. Her CT scans were not good. There ws very little brain tissue in evidence. The hospital neurologist commented "Well, the good news is, there is brain." At 7 days, she developed a shunt infection; it was removed and later replaced. She began feeding normally and even breasfeeding. Then, we had an MRI done. The neurologist tood us about the HPE. Nobody could beleive it! Alanna had no facial deformities and was quite alert and active. This same neurologist told us "I won't tell you she's going to be a vegatable, but I wouldn't bother with early intervention."

That was the last time we ever saw that neurologist and we thank God every day for the wisdom to ignore him! At 33 months, Alanna is an amazingly loving, verbal, and exasperating child. She knows her ABCs, her address, her birthday, the names of her 17 first cousins, her numbers to 15, and is now working on the planets with Dad. She receives occupational therapy for visual-motor problems, oral-motor therapy for mild chewing difficulties, and physical therapy for hypotonia. However, if you met her on the street or play ground, you problably would not notice much other than her crooked glasses, precarious balance, and flaming red hair!

We know that Alanna is truly unique and believe that she is a miracle child. We also appreciate the difficulties and pain of other families who have shared their stories here. We know very well that there will problably be more challenges ahead of us and are painfully deliberating the risks of having another child. We simply hope that other parents who receive an HPE or hydrocephalus diagnosis will realize that there is hope. With the help of a very supprotive family, excellent medical advice, and a little prayer, our HPE daughter has even developed a sense of sarcasm and humor. Who would have thought way back at that twenty week sonogram that Alanna might respond to my request for her to help me fold laundry by saying "Sorry, mom. I'm not available at the moment."