When my oldest daughter Leah was born, many people made the same observation: “Look at those fingers! So long and skinny…just like yours, Ellen.” Right after she was born, my husband went with her for a bath as I was stitched up after my c-section. When he returned, he mentioned that her eyes were a “funny color.”
All of those observations, straightforward and innocent on the surface, let me know that some of my darkest fears were probably being realized.
My daughter’s long, skinny fingers and toes, the bluish color in the whites of her eyes—these were signs that Leah had inherited a scrambled gene that would wreak havoc on her skeleton. When she was six weeks old, we received official word that Leah had indeed inherited my bone disorder, osteogenesis imperfecta (OI)—a condition that would likely cause her many fractures (I had about three dozen before the age of 11) and possibly painful corrective surgeries. I clutched her fiercely against my chest and told God that he had damn well better take care of this child. That day 14 years ago was the hardest day of my life.
I have spent much of the past 10 years or so writing about genetics and disability and the choices made possible by increasingly sophisticated technologies that allow parents to choose, to some extent, what sort of child they might have. I have talked to dozens of potential parents who, like me, have some serious genetic baggage and fear putting its weight on their children’s shoulders. And I have talked to some people who wonder whether, if their child does inherit some genetic menace that wreaks havoc on that child’s health and well-being, will they regret that they took such chances with a genetic lottery stacked against them?
Read full, original article: Can You Regret Having a Child Who Inherits Your Genetic Baggage?
