CEPEDA: When I chose life

Esther J. Cepeda

Esther J. Cepeda

CHICAGO — Here I am less than a week from my annual memorial to the daughter I lost at birth and I can't help but defend Rick Santorum's recent statements about prenatal testing being a gateway to abortion. Though I'm pro-choice, Santorum is not as off the mark as the passionate defenders of a woman's right to an abortion would like to admit.Last Saturday, Santorum dropped what some considered an outrageous bombshell at an Ohio campaign rally: "(Free prenatal testing) saves money in health care. Why? Because 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."

The next day, "Face the Nation" host Bob Schieffer pressed the candidate on his statement and Santorum said, "The bottom line is that a lot of prenatal tests are done to identify deformities in utero and the customary procedure is to encourage abortions." He noted that invasive prenatal tests such as amniocentesis carry a risk of immediate miscarriage and abnormal results very often lead doctors to recommend abortion.

Sure, Santorum was supporting his ardent pro-life stance, but that doesn't make him wrong on this point.

In early 2000, during my second high-risk pregnancy, I knew full well that my routine prenatal tests were never simply "routine" and that even sonograms were to be feared. A second-trimester ultrasound that showed abnormalities immediately led to an amniocentesis, and I underwent several other specialized tests designed to tell whether my baby was going to have a severe disability or even live long enough to be born.

The results were devastating: The girl I was carrying would either die in the womb or be born with multiple, severe abnormalities that would pain her for what would surely be a short, hospital-bound life.

The odds that medical therapy or surgical interventions would deliver a healthy child were astronomically remote. After a discussion of what sorts of disabilities we might expect, we left the hospital hoping that additional tests would reveal Down syndrome, which at that moment seemed a perfectly joyous alternative to the recommended abortion.

But by some estimates, up to 92 percent of women whose babies are diagnosed with Down syndrome choose to end the pregnancy. And doctors routinely recommend "elective termination" of fetuses diagnosed with neural tube defects and chromosomal disorders such as Trisomy 18, which Santorum's 3-year-old daughter Bella is living with, albeit with a great deal of medical attention and physical accommodations.

So let's not kid ourselves, Santorum is right. Prenatal testing does eliminate the lives of many babies, some who would never have made it to birth and others, like those with Down syndrome, who might not only have lived, but thrived. Today one of the top TV hit shows, "Glee," has featured not one but two actors with Down syndrome in recurring roles where their normalcy, and not their disability, is highlighted.

Unfortunately for me, I didn't hit the Down syndrome lottery and my team of high-risk maternal-fetal and genetic counselors suggested that I terminate the pregnancy. The normal outcome of a healthy pregnancy is a healthy baby, and that's not how mine would turn out. Ending my very ill fetus' life would obviously have been the best way to avoid further emotional, physical and financial trauma.

I chose life. I took a very long shot that my baby would miraculously be born well enough to live some semblance of a normal life, but that didn't happen. Like one of Santorum's sons, my daughter Wren died immediately after birth. And despite the heartbreak, risks to my long-term health, and exorbitant costs of a super-high risk pregnancy that ended with a full room's worth of empty-handed medical specialists, I wouldn't have chosen otherwise.

And that's the important part -- though I agree with Santorum's view of prenatal testing, I had the choice to have the tests and to then decide what to do with the results. It's not acceptable to ignore the human costs of advances in prenatal testing, but who is Rick Santorum, or anyone else -- even if they've been through such an ordeal -- to judge whether families should have those choices?

The bottom line for anyone who cares about whether they are able to opt for a one-in-a-million shot at a viable baby, or avoid certain tragedy before it unfolds, should be that such a choice is none of the next president's business.

Esther J. Cepeda is a nationally syndicated columnist. Email her at estherjcepeda@washpost.com.