You may remember Emily Rapp from her heartbreaking essay on living in the moment with her dying son. Now she’s written another searing piece for Slate, admitting that although she loves her son Ronan dearly, if she’d known while she was pregnant that he had Tay-Sachs—a painful genetic disease that has left him blind and paralyzed, and will likely claim him some time this year—she would have chosen to have an abortion. She writes:
I'm so grateful that Ronan is my child. I also wish he'd never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive…
I love Ronan, and I believe it would have been an act of love to abort him, knowing that his life would be primarily one of intense suffering, knowing that his neurologically devastated brain made true quality of life—relationships, thoughts, pleasant physical experiences—impossible.
That’s not to say a life with a disability is not worth living. Rapp herself was born with a congenital defect that led to the amputation of one of her legs, and yet she describes her life as fulfilling. But she believes that pregnant women should have the power to make their own decisions about whether to continue a pregnancy, with as much information as possible.
What do you think? Is a short life filled with pain better than never being born? If you discovered during pregnancy that your baby had a condition like Tay-Sachs, would you continue with the pregnancy?