A Mom Asks Santorum to “Meet My Son”

Presidential contender Rick Santorum recently criticized the Obama administration’s health care reform because it requires provision of free prenatal testing for pregnant women. Santorum stated that, “Free prenatal testing ends up in more abortions and therefore less care that has to be done because we cull the ranks of the disabled in our society.”

Responding to Santorum in a brutally honest post on Slate, Emily Rapp writes that, if she had known via prenatal testing that her son Ronan had Tay-Sachs (a degenerative, fatal disease), “I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion.” (Because an early screening in her pregnancy indicated there was no risk that the baby had Tay-Sachs, Rapp declined more invasive genetic testing that would have made a definitive diagnosis.)

Were I in Rapp’s shoes, I have absolutely no idea whether I would feel as she does. But I think her story is an important one for all of us to contemplate, whether we are pro-choice or pro-life, accepting or wary of prenatal diagnosis, living with disabilities or completely able-bodied (at least for the moment).

Rapp writes eloquently about the possibility of seeing more than one “truth” in her story, and believing both truths fully. 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.” Later on, after describing the physical deformity she herself was born with (and pondering what choice her own mother might have made, if she had known ahead of time that her daughter would be thus afflicted), Rapp offers another pair of seemingly opposite truths: “Do I think people with disabilities are of value in the world? Obviously, as I am one of them, and I love my life. Do I wish my child wouldn’t suffer, that it would have been better for him to have never been born than to watch him struggle to breathe? To know that he will never speak, walk, chew solid food, toddle, or move? Yes. One statement doesn’t cancel out the other.”

I know how it feels to live with truths that appear contradictory, but that I hold onto equally and fiercely. I love my daughter exactly as she is. And I wish she didn’t have osteogenesis imperfecta (OI—the genetic brittle bone disorder she and I share). I know that having OI has shaped me in life-giving ways. Yet I hate OI. If I had a magic fairy wand that could make OI vanish from our lives, I would not hesitate to use it.

In my book, No Easy Choice, I refer to paradoxical truths such as these as “stories,” and ponder the different stories that we all—every one of us—tell about ourselves and the world around us, to make sense of our lives. In the book’s conclusion, I write:

My story of living with OI, raising a beloved child with OI, and making reproductive decisions in light of OI really encompasses several stories. In one story, OI is a basic brokenness in need of fixing. In another, OI is just one of many human limitations in need of acceptance. When Leah is in the emergency room with a new fracture—drugged and defeated, yet receiving skilled, compassionate treatment from doctors and nurses who have made sick children their life’s mission—I can believe the story about the miraculous ability of modern medicine to fix problems that used to be unfixable. Or I can believe the story about the pain that no amount of drugs or toys or soothing words can banish. In reality, I believe each of those stories at different times, and sometimes several at once. My perspective on reproductive technology is influenced by these conflicting stories.

I am grateful to Rapp for laying her own conflicting stories out for the world to see and, no doubt, to judge. I do not agree with everything she writes. She believes that prenatal testing technology is inherently “value-less.” While the technology itself, apart from its human users, may be “value-less,” it is well-known among those familiar with reproductive technology (including medical professionals, ethicists, and patients) that the mere existence of screening technology exerts a not-so-subtle pressure on parents to use the technology and then to make decisions in light of what they learn from testing. Parents, of course, can choose not to have any prenatal testing done, and can choose to continue or terminate a pregnancy based on test results. But they do not make such choices in a vacuum. Our medical culture and the wider culture highly value health, independence, and self-sufficiency—and expect parents to do everything they can to ensure that their offspring meet these criteria.

But I wholeheartedly echo Rapp’s conclusion, in which she calls for a more “nuanced discussion” of the heartbreaking conundrums raised by prenatal testing, and the suffering that accompanies diseases such as Tay-Sachs. Nuanced discussion requires recognizing that it is indeed possible to tell more than one story about our lives and the lives of our children, and have them all be true. In today’s U.S. culture, in which we are always expected to pick a side in debates characterized as unequivocally black and white, nuance has become a lost, but oh so necessary, art.



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