Rick Santorum Archive

Rick Santorum, Meet My Son

This week my son turned blue, and for 30 terrifying seconds, stopped breathing. Called an “apnea seizure,” this is one stage in the progression of Tay-Sachs, the genetic disease Ronan was born with and will die of, but not before he suffers from these and other kinds of seizures and is finally plunged into a completely vegetative state. Nearly two years old, he is already blind, paralyzed, and increasingly nonresponsive. I expect his death to happen this year, and this week’s seizure only highlighted the fact that it could happen at any moment—while I’m at work, at the hair salon, at the grocery store. I love my son more than any person in the world and his life is of utmost value to me. I don’t regret a single minute of this parenting journey, even though I wake up every morning with my heart breaking, feeling the impending dread of his imminent death. This is one set of absolute truths.

Here’s another: If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), 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. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision. 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.

That it is possible to hold this paradox as part of my daily reality points to the reductive and narrow-minded nature of Rick Santorum’s assertions that prenatal testing increases the number of abortions (a this equals that equation), and for this reason, the moral viability or inherent value of these tests should be questioned. Prenatal testing provides information, a value-less act. I maintain that it is a woman’s right to choose what to do with the information that attaches value and meaning, and that this choice is—and must be—directly related to that individual’s experiences. What’s at stake here is not the issue of testing, but the issue of choice. 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.

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The tenor of the current debate frightens me, as it heralds a return to another age when women were not the trustees of decisions made about their own bodies. What I hope for other women is that they have the power to make their own decisions with as much information as it is possible to have, with respect to the specificity and complexity of their own circumstances, according to their own minds and hearts and not the dictates of another person’s worldview. Santorum believes that all life is inherently valuable, no matter how compromised or of what limited quality; that is one view. I believe that we need a more nuanced discussion about what quality of life is, and that it should be a woman’s right to choose to terminate a pregnancy when the path of her child’s life is as compromised—and as terrible—as my son’s.