It's one of those sterile, detached words doctors use to lend distance to nature's more gruesome unpleasantries – unpleasantries like a fetus whose neural tube fails to grow into a brain. But for the parents of these doomed babies, it is much more than just a medical term. Anencephaly is a shocking, 100% fatal reality. It is a reality so shocking that almost everyone's first reaction is not to deal with it at all.
Politicians, religious leaders, and even doctors have little to offer the parents of brain-absent anencephalics. "Put it all behind you" seems to echo from every corner. Forget those who might be spared your agony. Forget that two babies must die when one might live. Remain silent. You can try for another baby. Why fight the system for the chance to save the life of someone else's baby?
Meet Mike and Brenda Winner. In the fifth month of her first pregnancy, Brenda discovered that she was carrying an anencephalic infant after having a routine ultrasound examination. For weeks she desperately searched for someone who would accept the organs of her unborn baby for transplantation after it was born. But because of technicalities in the laws regarding organ donation and the definition of brain death, her efforts almost came up empty. But in her heart she knew she was doing the right thing, and there had to be someone out there in the medical community who agreed with her. Most of all she knew that she could not simply give up, turn her back, and walk away.
This is Brenda Winner's story. Or rather, it is the story of her beloved daughter, Jarren. It is the story of how an everyday homemaker and mother-to-be rose from obscurity to capture headlines worldwide and help establish the first medical protocol in American history to utilize anencephalic infants as organ donors. It is a story of survival and pain, of joy and remorse, and how the power of love for her unborn infant, Jarren, drove an ordinary woman to an extraordinary struggle for change.