I was so, so terrified. Not for me, but for her. Would she be okay? Would she be in pain? Please just save her! As I wheeled away from my family, the only feeling I remember is fear. In the OR, faces I didn’t know surrounded me. I was squeezing the hand of a person I’d never met as they prepped me for the emergency C-section.
Spina bifida, which literally means “cleft or split spine,” is the most common permanently disabling birth defect in the United States. According to the Centers for Disease Control and Prevention, about 1,645 babies are born in the U.S. with spina bifida each year.
“There’s a major problem with your pregnancy.” Are words no expecting parents anticipate hearing. At our routine twenty-week ultrasound, the ultrasound technician got the doctor, and we heard the words that would forever change our lives. “The bladder isn’t releasing urine” and “the amniotic fluid level is dangerously low.”
Growing up in the 1960’s, Dr. Diana Farmer’s mother taught Sunday school for disabled children where she first met children who had spina bifida.
“It was a really crummy disease,” Farmer said. Dr. Farmer is now leading innovative research, which holds promise of saving lives and lifetimes.