What We Think Today: Down Syndrome, Prenatal Testing, and the Questions We Face by George Estreich

I was thrilled when George Estreich offered this piece that compares two recent Today Show segments, both related to Down syndrome. If you don’t know of George’s writing already, I commend it to you for his thoughtful, careful, elegant approach to words and ideas. His memoir, The Shape of the Eye, will be released in paperback in April, and I’ll alert you to it again then, but you might just want to preorder it now (my review of it when it came out in hardback is available here)… 

On January 23rd, Today.com/Moms reported a heartwarming story on which I commented in the New York Times: a patron disparaged a child with Down syndrome in a Houston restaurant, after which his waiter refused, on principle, to serve him. As the father of an eleven-year-old girl with Down syndrome, I was both moved by the story, yet aware of the complications beneath it, the conditional belonging experienced by so many with disabilities.

On January 28th, Down syndrome was back on Today. However, this time the emphasis was very different.

The show profiled Jason and Robin Vosler, an expectant couple. Ms. Vosler had just gotten the results of a new noninvasive blood test—Sequenom’s MaterniT21 Plus—to determine whether their fetus had Down syndrome. In a much blogged-about exchange, Matt Lauer says, “Let’s get right to the good news,” and asks the couple for their test results. Ms. Vosler replies that “. . . the test checks for three different kinds of Down syndrome [sic], and that chromosome wasn’t showing, so we’re safe .  .  . the baby doesn’t have Down syndrome.”

Some parents have expressed anger, some great sadness. For me, the five-minute segment evoked a weary familiarity with a world of contradiction. Sometimes that contradiction remains at bay, and sometimes, as in this instance, it is painfully apparent. One day, on Today.com/Moms, a child with Down syndrome is a loved family member, and someone to protect. But less than a week later, on Today.com/Health, a child with Down syndrome is someone to protect a family from. Not being pregnant with one is “good news,” and because of a test, a couple is “safe.” You couldn’t invent a starker illustration of our attitudes towards Down syndrome, and disability in general—or the difficult questions coming our way, as our increasing acceptance of people with disabilities collides with increasingly accurate prenatal tests.

These difficult questions, however, are absent from the Today Show’s account, which emphasizes ease and low risk. It’s true that unlike invasive tests such as amniocentesis or chorionic villus sampling, MaterniT21 avoids the risk of miscarriage by using a simple blood draw. However, there are limits to the test. MaterniT21 is only recommended for “high-risk” patients, such as women thirty-five and older; according to guidelines issued by the American College of Obstetricians and Gynecologists, “cell free fetal DNA testing should not be offered to low-risk women or women with multiple gestations because it has not been sufficiently evaluated in these groups.” The same guidelines offer this caution: “Cell free fetal DNA does not replace the accuracy and diagnostic precision of prenatal diagnosis with CVS or amniocentesis, which remain an option for women.” As a result, ACOG recommends that “[a] patient with a positive test result . . . should be offered invasive prenatal diagnosis for confirmation of test results” [emphasis mine]. In other words,a woman with a positive result, wanting to be absolutely certain, might wind up having the invasive procedure anyway—thereby taking on the very risk of miscarriage she wishes to avoid. These complications run counter to the message of risk-free simplicity Today provides.

To be fair, telling a simple human interest story, when testing, Down syndrome, and pregnancy are involved, is next to impossible.  The subject, Robin Vosler, seems chosen by Today to deflect controversy— her intention, whatever the test result, was not to abort, and had there been a positive result, she would have sought out the specialists needed to help her child. Nancy Snyderman, the Chief Medical Editor, emphasizes this fact, and follows with a straw-man argument: “Critics will say, hey look, this is a way to find out early and then abort because we want the perfect baby.” In this telling, even the ethical issues are simple: it’s the appealing, telegenic prospective mom—who just wanted to be prepared, and who wasn’t going to abort anyway—versus the overwrought, anti-science “critics.”

But there are real questions to consider. In theory, Down syndrome is only the beginning. As our methods of detection grow easier and more accurate, how will we decide what counts as healthy? When dozens or even hundreds of conditions can be forecast, which tests will be recommended, and on what grounds? How can we guarantee that patients will not only receive good information, but be able to make sense of it? How will this test affect both the actual numbers of people with disabilities, and their welcome in our society?

Which brings me back to how the two stories fit together. In one, we’re supposed to feel good about the presence of Down syndrome; in another, about its absence. For me, the separation, the fact of two stories rather than one, is the heart of the problem. During the more recent segment, no one with Down syndrome was shown. No parent of a child with Down syndrome, or expert on Down syndrome, was interviewed. Given that the test’s very purpose is to identify the syndrome, it’s profoundly odd that the condition is barely mentioned, and the people who have it, or their families, never came up. The erasure is troubling.

We need to start putting these stories together; our tests will compel us to. Ultimately, we need to arrive at a coherent account of who we are, as a society and as a species. I hope that account will be more and not less inclusive, and that our stories bear accurate witness to the lives we include. The more we are able to predict about our future selves, the more we need to value difference, and to imagine—whatever we choose—the connection between our values and our happiness. In a world where we have the power to write those values into the species, a simple feel-good story is not enough.

The Shape of the Eye, George Estreich’s memoir of raising a daughter with Down syndrome, will be published in paperback and e-book by Penguin in April. George lives in Oregon with his family.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Thank you George, and Amy, for this thoughtful exploration of the discourse of Down syndrome in our media culture.

  2. Thank you for this beautiful analysis. I do have one question, though, and that is if this type of concern- about people aborting when they get a positive test reflecting on born people with the condition tested for- is not the same as abortion opponents thinking it devalues all of life for anyone to abort. In other words, is any abortion ever really a threat to a born, living, loved person? Does it really devalue people if we don’t have more, or as many people as possible? And how exactly? Thanks!

  3. Thank you so much for what your are doing. Speaking from a mother’s viewpoint, my second child was born with Down’s Syndrome 24 years ago. I chose not to have an amniocentesis at age 36. Of course there were no other tests then that were considered accurate. I told the doctor I wouldn’t take the chance of having a miscarriage when I wouldn’t abort anyway. In my case there was already a tug in my heart that there was something different about this pregnancy. Like many women, I already loved this baby. Would I love him any less if I knew he had Down’s Syndrome, or something else? Of course the answer is a firm no. It would have also added to an unwarranted anxiety during the pregnancy. I love him more for who he is. I love him more for what we’ve been through. I love him just as much as I love my daughter. I love that sweet personality the radiates in his smile. While he may not able to make a difference in the world, his story can and he makes a huge difference in mine. While there have been some that much snub their nose at my story, stating it is my fault, my biggest concern is really being a voice for my son and others. Perhaps it will only be in my small corner of the world, but perhaps a seed will have been planted. Every life has value. While it is devastating news at first, it really isn’t the end of the world. I was actually more afraid that he was going to have to have open heart surgery and I could lose this beautiful child I was given. God has given me what I’ve needed to get through many things regarding my son, and in life. Most of all I’ve been greatly loved by this young man, and greatly blessed. I really want to commend you for helping change the views of many. I didn’t know anything about Down’s Syndrome when I had my son. Hopefully, the world will become better informed because of people like you.

  4. Alison Piepmeier says:

    Whew, good stuff, George, as always. You’ve got it exactly: it’s the contradiction that’s troubling here. If not having a child with Down syndrome is “good news,” then what does that mean for our understanding of living people with Down syndrome? I think that our understanding of Down syndrome–and other kinds of disabilities–is a big part of why tests are available, why they’re offered, and why people have abortions. Our cultural understanding of Down syndrome has a HUGE impact of the lives of people with Down syndrome (as we can see clearly from the dramatic changes in the lives of people with Down syndrome over the last 40 years).

  5. George Estreich says:

    Thanks, everyone. I appreciate your comments. Like Alison, I’m most interested in the “cultural understanding of Down syndrome.” wcv, those are interesting questions about abortion, but to be honest that’s not my focus. I’m very hesitant to interpret the meaning of any single reproductive decision, and questions of “value” seem finally too abstract to me. A decision to terminate, or not, or test, or not, is a complex calculation about one’s own future, about family, about many things; the many deeply personal pieces that Amy Julia has published on her blog say that more eloquently than I could.

    In general, I’m very wary of focusing on single cases, and I’m also very wary of linking abortion to this issue. As I’ve written before, I think that people with Down syndrome are overshadowed by the issues they invoke, so to leap to arguments about abortion or eugenics or education or whatever risks repeating the very mistake made in the media. I recognize that my daughter, and others like her, exists at the crossroads of many agonized debates. But I would rather find common ground than toss her into the crossfire. For that reason, I try to focus on questions of how disability is portrayed.

    Beyond that, I’m very interested in the technology and its portrayal in the media, because both are powerful, and both create the context for the debate. What concerns me are the population-level effects, more than the individual decision: I do think that the widespread adoption of relatively risk-free early testing is bound to affect the numbers of people with Down syndrome in the world, and that being framed as something to avoid will likely affect the fortunes of those who exist.

  6. Indeed, if disability was not to been seen as a “thing” at all, and just an accepted part of the natural human condition, then testing, eugenics and abortion wouldn’t be in the discussion about Down syndrome. Unfortunately they are, and the momentum to see them as something to be avoided continues to be reinforced by a society that wants control over reproduction and seeks perfection, whatever that means. It seems that early testing will reinforce that further, so like any minority, we are in a vulnerable position.


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