“Look at those fingers! And her toes! So long and skinny…just like yours, Ellen.” I don’t recall how many people uttered those words during the early weeks of my firstborn’s life. Maybe only two or three. But I felt bombarded by this innocent observation. Shortly after my daughter’s birth, my husband, who accompanied her for a bath as I was stitched up after my c-section, had mentioned that her eyes were a “funny color.” At that first hint that my darkest fears would be realized, a heavy door slammed shut in my brain, locking away my dread about what, exactly, my daughter had inherited from me. But every time someone noted the resemblance between my daughter’s digits and mine, a dank fog of fear seeped in around the cracks.
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.Because of Leah, I have spent 14 years contemplating inheritance—all that we pass on to our kids, the ways that we both hope for and dread evidence that our traits live on in our children. Over those 14 years, technologies that allow parents to control what our children will or won’t inherit have become increasingly sophisticated and available. Today’s technology tempts us to believe that genes are destiny, that a particular combination of amino acids can predict what a child will look like and be like and live like. But genes are far more slippery things than that. My daughter Leah inherited my gene for OI. But the mutation that resides in every cell of both of our bodies has affected us in vastly different ways. Besides the three dozen fractures, I had a dozen surgeries to put metal rods in my leg bones to straighten and stabilize them. Leah has fared far better than I did. She has had 12 fractures and only two surgeries. Leah’s experience with OI has been far milder than mine—which doesn’t mean it has been easier.