Living With Spina Bifida: A Historical Perspective

On October 11, 1983, "Baby Jane Doe" was born in Port Jefferson, NY, and diagnosed with hydrocephalus and myelomeningocele, the most common and serious form of spina bifida.Doctors advised her parents that she would die without surgery.With surgery, she would live from 2 to 20 years, paralyzed, bedridden, incontinent, and severely "retarded."Based on this information, the parents declined treatment.Baby Jane survived however, to become a self-fulfilling prophecy; because she was predicted to have brain damage, surgery was withheld, resulting in damaging infections that might have been avoided with early aggressive treatment.Subsequent litigation and media coverage concerning Baby Jane Doe focused on the issue of "quality of life."(The story of Baby Jane Doe is recounted in many places.See, for example refs 1 and 2.)