A few years ago during Thanksgiving break, I was sitting around the kitchen table soaking in family cuentos with my mom, sister, tías, and primas as we prepared food for our annual Thanksgiving lunch. Mi prima congratulated me on passing my comprehensive exams—the hardest milestone of my graduate career. This conversation led to talk about my looming dissertation, which I mentioned would focus on Mexican-American women’s experiences with prenatal testing. The mere mention of my dissertation topic birthed an hour-long discussion about their pregnancy experiences, especially my cousin, who had a heinous prenatal testing experience with her second pregnancy when she was in her mid-30s. I knew at this very moment that I was onto something.
My dissertation explored how Mexican-American women envisioned and experienced one specific part of the prenatal testing regimen that many women go through during their pregnancies: the amniocentesis procedure. As a 2nd generation/5th generation Mexican-American woman, I am well aware of medical constructions of “the fatalistic Mexican woman” and of the ways in which various aspects of our culture (family, religion, gender norms, community, etc.) could shape understandings of this process.
To be honest, what I learned through interviews with 30 Mexican-American women shocked me. Much to my surprise, only one (yes, one) participant underwent the amniocentesis procedure. 29 participants refused the amniocentesis because “it wouldn’t change the outcome” of their pregnancies, because they did not see the need for the amniocentesis-related test information, and because the burdensome test could result in miscarriages and other issues.
The most important source of health information for these participants was not books, pamphlets or physicians—it was the people closest to them. Family members’ fear narratives about their own experiences with amniocentesis oftentimes persuaded participants to reject the test.
These women’s prenatal testing moments were undoubtedly situated within a complex web of ethnic, cultural, gendered, and familial factors. They discussed at length reasons for the adamant rejection the amniocentesis. At the center of many of their stories was the fact that they would not abort a pregnancy solely because of a chromosomal/genetic anomaly. As one participant mentioned, “As long as my baby is breathing and moving, she’s healthy. That’s all that matters.”
As with all dissertations, I ended with a number of conclusions, but I keep coming back to the idea of how these women constructed their own “homegrown understanding” of the procedure. These understandings – shaped in large part by the stories told by family members rather than biomedical definitions – included ideas about risk and about what a “healthy baby” is. They saw amniocentesis test not as information that could help them plan their future, but as a stressful burden that would have no bearing on the pregnancy outcome. These women evaluated the amniocentesis procedure based on cultural, family and experiential knowledge. And they rejected it.
As I left my dissertation defense one question continued to loom in my mind, though. I had just argued that my findings showed Mexican-American women as agentic and empowered participants in their medical care. After all, they had actively resisted the amniocentesis procedure, even in some cases at the behest of their physicians. But what if the knowledge and information that they use to make this decision isn’t medically sound? Is this an agency we should value? Thus, as I begin the next phase of my career, I still have more questions than answers. And I’m excited to continue the conversation.