I was six months pregnant, waiting with my sister, Elaine, who was also pregnant, to have my ultrasound. The doctors said after my first one at four months that Jason was a little small and they would want another look. The technician found the heart beat, checked his size, and became very quiet when scanning the head. She left the room and came back telling me that the doctor wanted me to go to his office. I argued that my appointment wasn’t until tomorrow. But she insisted that the doctor wanted to see me that day.

Elaine and I walked to the doctor’s office, not even thinking of what I was about to be told. When we got there my sister waited in the waiting area and I walked back to the examining room. I still had no clue. When the doctor told me he was very blunt. He said that I needed to see a specialist and left the room. I sat there for about ten minutes before I could make my way to the waiting room to get my sister. All I could do was to motion her to come to me. I could not speak. How could my child live with no brain? How could I tell Elaine? We were both due at the same time, and her child was normal.

Jason was born August 13,1990. He was small but beautiful. No one could ever tell there was anything wrong. He was whisked away to PICU. I didn’t see him again for two days. I was afraid to see him. The doctors said that he would never grow. No need to immunize him either; he wouldn’t survive infancy. They said I should find an institution for him.

I was lost. How could I take this child home knowing that he would die? I was so confused. Doug, my husband, said it best when I lay in the hospital. We would take it one day at a time and no more. I loved this child. He was a part of me. How hard could it be to take care of this little angel? In the beginning, he would be no different from any other baby. We decided that we would take our child home and love him until he was gone. As he got older we would learn to cope with what ever came our way.

Jason had his problems over the years. He had four VP shunts. He had a Mic-key feeding button implanted, a nissen, and had his tonsils and adenoids removed. Monthly hospital visits for pneumonia and other problems were routine. He was on oxygen 24 hours a day and on a bi-pap at night. He could not communicate, lost an early ability to coo and cry, and had no sight or voluntary movement. He seemed aware of his surroundings. When he heard our voices, he appeared to listen.

Jason did what all the doctors said he couldn’t: he lived for nearly 11 years and seemed happy with his life, limited as it was. His big sister Angela, three years his senior, couldn’t get enough hugs from him. She accepted him the way he was, as we all did. He depended upon us for everything and we provided it lovingly. It was a sad day when he was gone. Jason joined the angels on May 31, 2001.

For more information about hydranencephaly, and stories about other children, visit http://www.hydranencephaly.com

See photos of Jason through the years.