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Young feminist: being empowered to ask for health care we want...and don't want!.

"It was the worst two weeks of my life. If I had known what was going to happen, I would have never have had the test." So says my mother about her experience with amniocentesis. She was 35 years old and pregnant with my youngest sibling--my sister It was her sixth pregnancy and, despite having had three miscarriages, my mother had always enjoyed being pregnant. I grew up hearing about her pregnancies and the unique experiences she had while she was pregnant with my brother, sister, and me. I admired how strong she had been when she lost three wanted pregnancies. While each of these pregnancies came with its own challenges and joys, the time she was tested for genetic abnormalities, and the two weeks of waiting for the test results, marked the only time my mother was unhappy during a pregnancy.

It all began when my mother went for an appointment with her obstetrician. He alarmed her by pointing out that, because she was over 35, the fetus was significantly more likely to have a genetic abnormality--specifically, Down Syndrome. Amniocentesis and chorionic villus sampling (CVS) are common prenatal tests used to detect fetal genetic mutations; they analyze fluid or cells extracted from the amniotic sac using a needle that placed through either the abdomen or vagina. Other, less physically invasive, prenatal tests include blood tests and ultrasounds to detect fetal impairments. Our Bodies, Ourselves notes that becoming pregnant in one's late 30s or 40s increases the risk of fetal impairments such as Down Syndrome, but that a large majority of these pregnancies result in healthy births.

In modern Western medicine, prenatal tests like amniocentesis and CVS are offered to women as a way to screen for fetal impairments. When a test is positive for a genetic mutation, the woman can decide whether to prepare for a child with the condition, or terminate the pregnancy. Not everyone wants these tests, and not everyone has them. But, my mother didn't know she could opt out of having amniocentesis, and she did not receive complete and thorough information from her provider about its risks and benefits. She didn't know that she could experience severe cramping as a result--which she did or that there is a slight risk the procedure will cause a miscarriage, which happily didn't happen to her. Nor was she given the opportunity to think about the decision about having amniocentesis or talk about it with her spouse or other family members.

Faced with the information that, due to her age, she had an increased likelihood of having a child with a genetic anomaly, and that pregnant women over 35 often have amniocentesis to assess any genetic abnormalities, my mother assumed the procedure was required. While her doctor didn't specifically state that it was necessary to have amniocentesis, she made this assumption based on the power of her doctor's medical authority. Her physician, with his specialized medical knowledge, dominated the interaction--whether he intended to or not. My mother, who had no prior knowledge about the procedure, took her physician's recommendation as her choice.

The test was quickly administered and my mother was told to return in two weeks to receive the results. Once the results came back, she was relieved--not, as some would expect, because the test results showed no genetic abnormalities. Rather, having the results enabled her to enjoy her pregnancy once more without anticipating a result that had the potential to change the way she viewed her pregnancy. My mother had unknowingly been put into the situation of experiencing a "tentative pregnancy," where the potential diagnosis of genetic abnormality shapes how she thinks about the rest of the pregnancy. (1) My mother knew she was going to carry her pregnancy to term regardless of the test results. Had she been able to convey this to her physician, she would not have gone through with the procedure.

While I always appreciated and enjoyed my mother's stories about being pregnant, it wasn't until I got older that I realized the significance of her experience with amniocentesis. My interest in women's health and rights led me to revisit the experience with my mother, and ask her what she would have preferred to do during this pregnancy. She said, "I would have wanted the choice."

Now that my mother knows amniocentesis is a voluntary test, and is not required for women even over age 35, she regrets that she did not have the chance to voice her concerns. Looking back, she wishes she had been able to ask her own questions about the procedure, learn that the test was entirely voluntary, and have time to reach her own decision about whether or not to proceed.

Various public health and women's studies courses in college helped me place my mother's story in the broader context of the women's health movement, and of women's access to health care services. There is a running history of women not being able to access appropriate resources in order to make decisions regarding their health care. Furthermore, access to services continues to be limited, particularly for poor women and women of color. In short, my mother's story inspired me to act and get more involved in women's health care issues.

I began by speaking with faculty members and students who were interested in health disparities and gender issues. Their guidance led me to conduct my own research projects and presentations, engage in activism, and intern at the NWHN. Through these experiences, I have gained a great foundation for a career in women s health. I wanted to recognize the inspiration my mother gave me, so my final honors project centered on the ways that pregnant women confront the decision to use tests and technologies like amniocentesis.

As part of this process, I spoke with people who are involved in health care activism. I heard a variety of experiences and views about prenatal testing and came to understand the range of perspectives that exist. Some women feel that the routinization of such testing is empowering and beneficial to women. Others feel that it is overused and that women are not given enough information to make informed decisions. Yet, everyone agreed that access to complete information on the risks and benefits of procedures like amniocentesis is essential to informed decision-making.

I will keep working to promote both women's access to full information about health care procedures and choices, and their complete agency in health care settings. This passion stems from what I learned from my mother's experience. Rather than viewing the issues she faced as solely a problem with counseling on prenatal testing, I see it as a broader issue, one that highlights the continued importance of advocating for women's health concerns and needs.

REFERENCE

(1) Rothman, BK, "The Tentative Pregnancy: Then and Now, Fetal Diagnosis and Theraphy 1993; 8(1): 60-63.

Shadia J Mansour is a recent Public Health and Anthropology graduate from the University of California at Irvine. She aspires to work in health care activism and hopes to continue her education in Medical Anthropology.
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Title Annotation:young FEMINISTS
Author:Mansour, Shadia J.
Publication:Women's Health Activist
Date:Sep 1, 2013
Words:1177
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