Prenatal Testing Could Have Saved My Son a Lifetime of Suffering

What women really think about news, politics, and culture.
Feb. 27 2012 6:45 AM

Rick Santorum, Meet My Son

He has a degenerative disease that has left him blind, paralyzed, and increasingly nonresponsive. If I had known before he was born, I would have saved him from suffering.

Emily Rapp and Ronan.
Emily Rapp and her son, Ronan

Photo courtesy of Emily Rapp.

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.

Advertisement

Here's another set of truths for the moral and ethical mix: I was born with a physical deformity in the age before the evolution of advanced ultrasound technology that may have detected it. My mom did not have a choice about terminating her pregnancy, although when I was born and she was told that I might be retarded, that I might never walk, and that given these possibilities she might want to consider institutionalizing me, she probably wished she'd had the choice. Regardless of what she may or may not have decided had she been possessed of all the information prior to my birth, regardless of the fact that none of the doctor’s warnings had any truth to them, it would have been her choice to make.

In 1974, we did not have the prenatal testing available to us now, and the restrictions on abortion were much different. Santorum's ideas advocate a return to that oppressive historical situation where women were punished for having sex, for making any kind of reproductive choice whatsoever, for being women, for being human beings, for making decisions about the course and shape of their lives. 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.

Rick Santorum, I would like you to meet my child. You should see how beautiful he is; you should see how he suffers, how his parents suffer. And I'd like you to meet me, as well, with my artificial leg and strong body and big, beautiful, complicated life full of friends and books and meaningful work and sex and all kinds of texture and heaps of subtlety and contradiction; in short, a full life. My mother made a choice without knowing she had one. I made a choice without having all the information. Neither choice is bad or good; neither is this one thing or the other.

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.

Emily Rapp is the author of Poster Child: A Memoir, and Dear Dr. Frankenstein: A Memoir, forthcoming in 2013.

  Slate Plus
Tv Club
Oct. 30 2014 7:27 PM The American Horror Story: Freak Show Podcast, Episode 4 The “Edward Mordrake (Part 2)” edition.