[cf. Huntington’s, deliberate ignorance] …When she decided to start a family of her own, they had a tool available for not passing on frontotemporal dementia: selective embryo transfer. “C” could have her embryos frozen, and doctors could implant only the ones that did not have the mutation. More than a year of arduous procedures followed: fertility treatments and embryo retrieval followed by 4 attempts to implant, none of them successful. “My body did not like frozen embryos”, C. said. She was readying herself for another retrieval and a fifth implantation when she found she’d become pregnant naturally.
This, she told me, wasn’t planned—though given the difficulty they were having in conceiving, they weren’t inclined to be vigilant about birth control. She chuckled dryly when she told the story; a life filled with unexpected twists gets one more. She and her husband had all the obvious worries about the family mutation, but by then they had plenty of practice playing through those fears. Instead of fixating on what their child might inherit, C. thought about the clock ticking in more ways than one. She was 36, and after 4 attempts, it felt a little like now or never. With everything she had lived through and everything that was coming, she believed that good fortune was too precious to turn her back on. Who’s to say what other parents may be passing along to their children, genetic risks they don’t know about and that no one can test for? And more broadly: Isn’t she allowed to want this for herself? Doesn’t everyone have the right to a family?
Her aunts, uncles and cousins all had to be wondering about the genetic implications of having children. But the mutation casts a shadow over every interaction: Those who have it are too preoccupied to question the choices of others, and those who don’t feel too guilty to second-guess those who do. Barb, for one, has never broached the subject with C.
…They have not tested their son for the mutation. That, C. told me flatly, will be his decision. “He’ll learn eventually that there’s a possibility”, she said. “I’m not going to ruin his life, you know, worrying about this.” And if her son is diagnosed one day? It’s easy for her to daydream about new genetic editing techniques like CRISPR swooping in to save him with one simple, graceful, elegant snip—deleting the problematic mutation from his DNA. No cure is imminent, but that can always change, C. tells herself. “I think that in the next 30, 40 years, there’s going to be a lot of movement on this stuff”, she said. “I think he has a better chance than I do—and definitely more than my mom did.”
Of course, it’s probable that her son will be there to observe her changes, just as she observed her mother’s. She and her husband have made arrangements, with her father’s help, for any long-term care she’ll need. Her genetic mutation clearly dictates certain things about her life, but she maintains she still has choices. Her choice is to decide—to insist—that her reality is not so different from others’. “Even though I didn’t really have a mom, you know, I love my husband”, C. said. “I love my child, I love my dog, I love my career—you know, I love my friends, I love my family. Am I going to focus on things that are bad?”
None of us know how our stories will end, she was saying, or what shape we’ll be in by the time the end comes. “I guess another thing that I always kind of told myself growing up was that everyone is given a certain amount to deal with in life. And I’m dealing with it early, so the rest of my life is going to be great.”