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Carole Joffe: Personal Tragedies and Public Cruelties: Speaking Out Against the Stupak-Pitts Amendment

Today's post is from Carole Joffe, author of Dispatches from the Abortion Wars: The Costs of Fanaticism to Doctors, Patients, and the Rest of Us. Joffe is professor of sociology at the University of California-Davis and a researcher at the Bixby Center for Global Reproductive Health at the University of California-San Francisco, and she contributes to the blog at

Joffe"Well, it looks like the reinforcements have arrived!" a beaming Diane DeGette, congresswoman from Colorado, and a key leader of the abortion rights forces in Congress, recently told a spirited crowd overflowing a Senate auditorium. The prochoice movement was admittedly caught off-guard by the last minute passage of the Stupak-Pitts amendment to the House health care bill, a measure which would have the effect of massively restricting abortion coverage by insurance plans, even private ones (links to pdf).

But now a rejuvenated movement got its act together and brought approximately 1000 supporters to Capitol Hill for a day of serious lobbying.

The day was full of fiery speeches by legislators and advocates, and visits to thank supportive politicians and to educate/cajole undecided ones. The preponderance of younger women (and some men) in the crowd was deeply heartening to the old-timers. Like many political gatherings at moments of heightened stakes, the event had an almost festive air, as veterans of past campaigns greeted each other, and as strangers from the same states quickly bonded and formed groups to lobby their state's representatives together.

For this correspondent, however, the most moving and significant part of the day was my conversation with three women who had later abortions. They were introduced to me by staff from the National Abortion Federation. All three women-- Dana, Christie, and Mary-- had experienced much wanted pregnancies that took nightmarish turns. Dana found out at 28 weeks of pregnancy that the brain of her baby (and for women carrying much desired pregnancies, "baby" rather than "fetus" is the term typically used) was missing the crucial band of tissue that connected the right and left hemispheres (agenesis of the corpus callosum in medical terms). This and other brain-related anomalies meant that her child, if carried to term, would suffer repeated seizures, and be unable to suck, swallow, feed, walk, talk, or know his or her environment. Dana and her husband saw no alternative to having an abortion-- for the sake of her two year old son, for the sake of their marriage-- but most of all for the baby they already called "Lil W." "When I felt him kick before the diagnosis, I thought 'great'! When I felt him kick after I got the diagnosis, I knew he was having seizures."

Christie, five months pregnant with a second daughter, found out via ultrasound that the baby had a serious birth defect called congenital diaphragmatic hernia, a hole in the diaphragm which prevented her lungs from developing. The condition also led to the baby's heart not pumping properly. The diagnosis, which came on the Friday of Easter weekend, led Christie and her husband to anguishing rounds of Internet research, discussions with family, and additional physicians, none of whom could give a certain prognosis. When the couple was told by a trusted doctor that this was one of the worst cases of cdh he had seen, and that there was only a 10% chance of the baby surviving to term, they made the wrenching decision to terminate the pregnancy.

After undergoing years of fertility treatment, Mary was pregnant with a son, already named David, when she found out at 22 weeks of pregnancy that due to the atrophy of his lungs and kidneys ( a condition known as Potter's Syndrome), there was virtually no chance of his survival beyond a few hours, if indeed he survived until birth. As Mary told me through tears, if she had continued the pregnancy, "my baby would have suffocated to death."

These women were alike in the heartbreaking course of their much wanted pregnancies, but each had a different experience with paying for the very expensive procedures each obtained. Christie's experience with insurers was the least traumatic. She was induced into labor at a local hospital, by her own ob/gyn, and after 16 hours of labor, gave birth to a stillborn girl. "I was able to hold her, kiss her sweet face and say goodbye." Her husband's private medical insurance plan paid for the procedure, sparing the couple the approximate $10,000 cost.

Mary was stunned and enraged to learn that because she was covered through her husband's health insurance, and he was a federal employee, her abortion, also around $10,000, would not be covered at all. "I felt it was a moral judgment from the government, that they wouldn't pay for my abortion, it was like they were kicking me when I was down...were they saying I didn't love this baby?" Mary's abortion also took place at a local hospital-- in decidedly less friendly conditions than Christie. (Initially, she was told by the hospital that she might have to share a room with another patient on the labor and delivery floor, that is with someone who would be joyfully welcoming a newborn. Fortunately, Mary ultimately was able to arrange a private room.) Mary and her husband, both lawyers, decided to appeal the decision to not have her abortion paid for by her insurance company. Surprisingly enough, they won.

Dana, whose abortion took place last summer, when she was 31 weeks pregnant, was unable to receive care in her own community (demonstrating how many local hospitals are unprepared to handle these kinds of medical situations). She had to travel to an out of state clinic, where she was treated compassionately-- but received a staggering bill of nearly $17,000. She simply has not received an answer at this point whether her insurance company will pay for the procedure or not. So she is left grieving a desperately wanted child-- while at the same time deeply worried about the impact on her family if they are liable for the fee.

While it is true that most abortions occur in the first trimester of pregnancy and are not due to fetal indications, such cases as those described here are more common than most people realize. The cultural invisibility of these cases is largely because most women in these situations have in the past kept their tragedies to themselves or shared only, via the Internet, with those in similar situations. The Stupak-Pitts amendment, if it becomes incorporated into an eventual health reform measure, would have the effect of further eroding insurance coverage of abortion, ultimately affecting those even with private insurance. In spite of the different outcomes experienced by Mary, Christie and Dana, all three of these women have taken the step of going public with their stories because of their profound belief that no women or her partner should be fighting bureaucracies or facing possible bankruptcy at the saddest moment in their lives.

(Note: After her abortion Christie, and other women with similar experiences, founded a group which knits blankets for those women who undergo abortions because of poor prenatal diagnosis. In some cases, such as Christie's, women are able to hold their stillborn babies after an induction procedure; in other cases, the blankets are intended as a memento of the lost child.