Transforming Women’s Lives: Synergies for Success in Treating Obstetric Fistula

Karen Beattie

Providing comprehensive care for fistula survivors demands a coordinated group effort, from finding women in need of repair, to transporting them to services, to reintegration.

This article is part of a series by Rewire with contributions from  EngenderHealth, Guttmacher Institute, the International Women’s Health Coalition, the Fistula Foundation, the United Nations Population Fund (UNFPA), and the Campaign to End Fistula.  All articles in this series represent the views of individual authors and their organizations and can be found at this link.

The persistence of obstetric fistula in the world today provides ample evidence that health systems are failing women. Each year, more than 350,000 women die from complications of pregnancy, childbirth or unsafe abortion, and for every woman who loses her life, some 20 more suffer a delivery-related injury or illness. Obstetric fistula is among the most devastating of these injuries because it results in a lifetime of chronic pain and incontinence and often abandonment and complete destitution.  The good news is that fistula repair surgery can restore dignity and health to hundreds of thousands of women now suffering fistula. Across Africa and Asia, where fistula is most common, talented and dedicated surgeons are doing just that.

But knowing how to repair fistula is only half the battle. A multitude of players are needed to meet the demands of fistula care, from talented surgeons, skilled nurses, and anesthetists to hospital administrators, program managers, curriculum writers, advocates, community groups, politicians, and donors. The challenge lies in connecting those actors with the women who are in need of their support.

Providing comprehensive care for fistula survivors demands a coordinated group effort, from finding women in need of repair, to transporting them to services, to reintegration to community life following surgery. To make all of this work, and to transform the lives of women with fistula, the many dedicated players must share a vision, communicate well, build consensus and complement one another’s efforts. Together we are much more powerful and will have a far greater impact on the health of women globally.

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Indeed, this is already happening – and successfully. I am the director of the Fistula Care Project, which is managed by EngenderHealth and funded by USAID. Our organization has been a member of the International Obstetric Fistula Working Group (IOFWG), coordinated by UNFPA, since it was founded. By bringing together partners from the international, national, and local levels, this informal collaboration is building bridges across disciplines, helping us share lessons learned, identify gaps in what we know, and propose, implement, and evaluate effective solutions. Through the IOFWG, Fistula Care is able to create alliances with organizations and individuals with different perspectives, see where our interests intersect, and together commit to ending fistula through a holistic approach to prevention, treatment and rehabilitation. It is arguably the most effective partnership I have seen in 35 years in the reproductive health field.

Just as collaboration and cooperation are imperatives globally, so too are they needed at the national level. Nigeria is one example where such progress is being made, driven by a government commitment to significantly improve maternal health. One out of every ten maternal deaths in the world takes place in Nigeria, which also experiences high rates of obstetric fistula A number of factors contribute to these figures, and as part of a larger response five years ago, the Nigerian Federal Ministry of Health launched the 2005-2010 National Plan for Obstetric Fistula, a strategy coordinating the work of actors across federal, state, and local levels. The broad aims of the plan are to prevent fistula from happening while also increasing access to care through advocacy, research, improved efforts to encourage health-seeking behaviors and shape cultural norms, better rehabilitation and reintegration services, and more effective mechanisms for partnerships and coordination, among other strategies. A recent review of the Plan showed state and federal level commitment, with dedicated surgical teams providing services to women, but there is still much to do.

In support of the National Plan, Fistula Care facilitated the formation of a clinical peer-support network in Nigeria, to increase access to repair services and standardize and improve the quality of those services across health centers. What this means in practice is that periodically 3-5 fistula surgeons meet at one center, where they are able to help a greater number of women, learn from each other, and because the group of surgeons has varying levels of skill they are able to handle a range of surgeries from simple to complex. These pooled efforts also raise awareness in communities, tackling the backlog of cases that most centers experience, and strengthen the skills of all involved. Surgeons and other health professionals also meet quarterly to discuss clinical issues and share what they have learned. This collaboration brings more women around the country into health centers, offers them better support and services when they walk through the door, and strengthens the skills of clinicians in the process.

Granted, collaboration isn’t the silver bullet for ending or treating fistula. Many other obstacles exist. No matter how well we work together, availability of resources and the political will to address this issue are still key to effective solutions. Competing priorities will always plague conditions such as fistula, which, although severely debilitating, is not treated as a life-threatening emergency. Investments are needed in many areas, such as to improve the quality of care at hospitals, to expand reintegration services to help women transition to normal life after surgery, and to spread awareness about the importance of seeking help during pregnancy to prevent fistula from occurring.

Through partnerships, including that of USAID, in Nigeria alone Fistula Care has supported more than 5,000 repair surgeries since 2007. Globally, since 2005, this number is fast approaching 18,000 across USAID-funded sites. Although we have a long way to go before reaching the millions who have fistula and the thousands more women who develop fistula each year, this is an important step forward and can strengthen and improve quality of care across health systems around the globe. The women whose lives are transformed by these surgeries remind us every day why we do what we do. With effective coordination and meaningful strategies in place, we achieve far more together than each of us does as an individual or organization.

Culture & Conversation Maternity and Birthing

Exploring Birth Justice: A Conversation With Julia Chinyere Oparah and Alicia Bonaparte

Kanya D’Almeida

Rewire delves into the emerging birth justice movement and some of the historic and contemporary examples of how Black women and women of color, as well as trans and gender nonconforming people, have fought to preserve pregnancy and childbirth as a safe and sacred experience.

The numbers surrounding maternal and child health are bleak: Black women are three times as likely to die giving birth as their white counterparts; infant mortality rates for Black children are three times higher than those of white kids; and despite a widely held belief that vaginal deliveries are the safest route for both mother and child, women of color represent the highest cesarean rates of any other demographic in the United States.

Behind these statistics, however, are powerful stories of grassroots childbirth activists and traditional birth workers of color, including midwives and doulas, coalescing for “birth justice.” Building on a long history in which Black women and women of color have resisted birth oppression through the centuries, the term birth justice was coined in an effort to foreground activism and justice for birthing parents in movements around reproductive justice and Black lives.

A newly released anthology titled Birthing Justice: Black Women, Pregnancy and Childbirth explores some of the key issues within the nascent movement, including efforts to end the criminalization of pregnant women of color and trans or gender-nonconforming people, advocacy that aims to expand access to traditional and indigenous birth workers, and struggles to resist medical violence. The anthology is a project of Black Women Birthing Justice, a collective dedicated to transforming birthing experiences for Black women.

Foregrounding the stories in this collection are historical analyses of medical violence and “medical apartheid,” which shaped the fields of obstetrics and gynecology in the United States, as well as a close look at the ways in which “a patriarchal medical establishment seeks to control women’s bodies.”

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In an interview with the book’s co-editors, Julia Chinyere Oparah, co-chair of ethnic studies and director of the Research Justice at the Intersections Scholars Program at Mills College, and Alicia Bonaparte, associate professor of sociology at Pitzer College, Rewire delved into some of the intersections between the emerging birth justice movement and the broader reproductive justice movement, and explored some of the historic and contemporary examples of how birthing parents have fought to preserve pregnancy and childbirth as a safe and sacred experience.

Rewire: Walk us through the current landscape of the birth justice movement.

Alicia Bonaparte: I consider this a movement that is designed to respect the rights of all individuals who aspire to become birthing parents and have a child in a supportive environment: one in which the birthing parent has autonomy over their body and the ability to choose the ways in which their birthing process flows, from the prenatal to the postpartum process.

Julia Chinyere Oparah: This is a movement led by Black women and women of color, so the focus is on dismantling inequalities around race, class, citizenship, sexual orientation, and all of the intersecting oppressions that lead to negative birth outcomes, particularly for women of color, trans folks, low-income communities, and immigrant women. We are working toward reclaiming a midwifery tradition that originates within communities of Black women and women of color, and making sure these communities have access to these alternative birthing practices, including doula services. We are trying to raise awareness and build grassroots power, so we focus on ways in which communities can come together, talk about the violence, coercion, and neglect that’s happening in medical contexts, and work together to improve birth inequalities. We look at disproportionate maternal and infant mortality as the very visible tip of the iceberg, but we also go further to examine issues that might not necessarily cause mortality but that lead to pain and lasting trauma.

Rewire: What are some of the synergies between the reproductive justice (RJ) movement and the birth justice (BJ) movement? Are there distinctions between the two?

JCO: The BJ movement is part of the broader movement to dismantle reproductive oppression. Both the RJ and BJ movements aim to decolonize our bodies, and both advocate for the right of every person to choose whether or not to carry a pregnancy to term. Many of us in the BJ movement are birth activists who come from the RJ movement, so there isn’t a huge difference in terms of our frameworks, which are really intersectional. The only real difference is that we try to center issues that sometimes get sidelined in the larger RJ movement, such as fighting the stereotyping of women who choose home births as selfish and irresponsible, or highlighting the disproportionate impact of VBAC (vaginal birth after c-section) bans on women of color. We foreground the right to choose when, where, how, and with whom to birth, and try to lift up experiences that have been somewhat invisible in reproductive justice organizing, such as the right to access traditional and indigenous birth workers.

AB: Another synergy is that both the RJ and the BJ movements aim to lift the voices of women of color and resist a narrative that is dominated by white middle- and upper-class women. Both movements also aim to push beyond the narrow boundaries of “choice” and instead use a lens of economic and racial justice. But the movements diverge slightly when it comes to policy. Birth activists are trying to raise legal and policy issues that would, for instance, force insurance companies to pay for midwife-assisted births. Nationally, midwifery services covering everything from prenatal to postpartum care run between $6,000 and $8,000. In comparison, hospital births can cost upwards of $15,000, depending on what interventions are deemed “necessary” for the birthing parent. So midwifery-assisted birth is actually cheaper than a hospital birth assisted by an OB-GYN, and yet policy fails to address this—so this is something the birth justice movement is fighting for.

Rewire: The book talks a lot about medical violence and medical apartheid. Can you explain these terms, in both historical and contemporary contexts?

JCO: Both terms refer to the ways in which the bodies of Black people, both alive and dead, have been made into sites of medical examination, to achieve medical advances that improve the health of white communities. It’s important to foreground Black women’s stories here: such as the story of Anarcha, an enslaved Black woman who was forced to endure a series of horrendously painful medical experiments at the hands of J. Marion Sims, a white physician who is often held up as the so-called father of modern gynecology for “pioneering” a technique to repair vaginal fistulas (a condition caused by traumatic or obstructed labor resulting in an opening between the birth canal and the bladder or rectum) by experimenting on Black women with fistulas. Scholars like Harriet Washington have documented the legacy of American obstetrics, in which the bodies of enslaved Black women have been used to further birth options for white women. She documents the work of Louisiana surgeon Francois Marie Prevost, who “introduced” the cesarean section in the 1820s. At the time, opening up a woman’s abdomen was considered a death sentence, yet this was exactly what was done to Black women in the name of advancing medical techniques.

AB: An example of contemporary medical apartheid might include the ways in which, for example, Black and Hispanic women receive disproportionately fewer screenings for potential birth complications like preeclampsia. The medical establishment is grounded in racism, classism, and inherent sexism, and so unfortunately these axes of oppression come to the fore in doctor-patient relationships. Involuntary c-sections are another example of medical violence in the way we see women of color experience far higher rates of c-sections than white women. In particular, women of color are coerced by OB-GYNs and nurses [who convince them] that they are acting in the best interest of the child, despite the fact that many of these c-sections are unnecessary and unwarranted. We see hospital workers like nurses resort to fear-mongering to create the narrative that you are not a good mother if you don’t subject yourself to the unnecessary interventions and processes that the medical establishment has chosen for you, and this also hits Black women and women of color hardest.

Rewire: Who are “birth revolutionaries,” and how are they reclaiming natural birthing traditions?

JCO: Two sections in the book, “Changing Lives, One Birth at a Time” and “Taking Back Our Power: Organizing for Birth Justice” really lift up the stories of birth workers and birth activists working to change the systems, policies, and spaces surrounding pregnancy and childbirth. The word “revolutionary” suggests that the movement is not only about reform and tinkering around the edges, so to speak. We are not looking to simply reduce disproportionate mortality rates; we are seeking a fundamental transformation of the conditions under which we become pregnant and give birth so these inequalities no longer exist. One example I can point to is Tina Reynolds and the Women on the Rise Telling HerStory initiative, an advocacy organization comprised of current and formerly incarcerated women resisting the brutality of the prison system, such as the shackling of women during labor.

AB: I co-authored a chapter in the book with a Black birth revolutionary named Jennie Joseph who works to change deleterious birth outcomes for women. She has worked specifically in the three counties in Florida that have the worst maternal and infant health outcomes for women of color and has created a program called the JJ Way, which unites volunteer community health workers with birthing parents in underrepresented and underserved neighborhoods to improve overall health outcomes. Such efforts amplify birth advocacy and activism for the benefit of the entire community, and I would argue that this is revolutionary.

Rewire: The book discusses the “commercialization” and “co-optation” of traditional birthing practices. Can you tell us what this means?

AB: If you have a global perspective on childbirth, you will notice that midwife-assisted births are the most common form of delivery worldwide. Here in the United States, however, midwifery has long been denigrated by the white medical establishment, and associated with superstition and other “non-scientific” practices. Birth workers have fought against this quality versus quantity approach, which frames hospital births and all their attendant interventions as being the better option. This is largely the result of living in a highly consumer-driven society.

JCO: The other side of the coin is that natural birth and midwifery activists have achieved greater acceptance of these practices, but this has not opened the door to women of color because the system is premised on the ability to pay. A typical response within a highly commercialized and consumerized society is that the establishment will recognize certain demands, but only for those who are able or willing to pay. Coming at this from an economic justice lens, we see this as exclusionary, since many Black women and women of color do not have the means to “purchase” their preferred birthing process. This is where we return to what civil rights activist Ella Baker called “legalism”—the idea that laws alone will not build participatory democracy. She believed that change would not come only from individuals speaking to power in the language that power understands, and advocated for the mass mobilization of collective power. In the same way we see arguments for the legalization of midwifery, which stops short of calling for it to be accessible.

Rewire: What would you say are some of the most important messages in the book?

JCO: One of the messages I’d like to lift up is that this is an urgent movement about saving our lives. I consider birth justice part of the broader Black Lives Matter movement, especially the SayHerName campaign, which has really worked to center women’s voices and stories. In the same way, this book highlights how Black women are reclaiming birth as a powerful and beautiful experience, despite all the forces of birth oppression. Many stories in the anthology uphold moments of what I would call “autonomy,” where Black women and women of color have created completely separate spaces and moments of full empowerment. This is a message of hope in the now—we are not only struggling for a future birth experience but celebrating the birth revolutionaries who are decolonizing the birth experience in the present moment too.

AB: One thing I think the book highlights that is missing in conversations about reproductive justice is the shame associated with miscarriage. I think there has been a lot of internalization of the idea that women are machines who exist solely for the purpose of producing children—and when we are unable to do so it means we are defective in some way. It’s extremely important to interrupt this narrative with one that centers the autonomy of women and birthing parents, and fights the notion of miscarriage as something shameful. We have a chapter in the book by Viviane Saleh-Hanna, a professor at University of Massachusetts Dartmouth, “On Natural Birth and Miscarriage,” which really speaks to this important message.

And finally, one of the things that I find incredibly powerful about the anthology is that we historicize the cultural traditions of Granny Midwives, older Black women who have functioned within Black communities not only as birth caretakers but also health workers for the entire community. So we start there, and end the book by looking at ways in which activists are reclaiming these traditions, and reclaiming the birth space as something sacred, which I see as a really hopeful message.

This interview has been lightly edited for clarity.

Commentary Human Rights

Improving Reproductive Care for Women in Jail Is Not an Impossible Task

Kyl Myers

Women in city and county jails frequently face barriers to accessing contraception, abortion, prenatal care, and disease screening and treatment. But preventive family planning can be improved in jails around the United States by implementing a few core tenets for those incarcerated there.

Millions of the most medically underserved women in America enter local jails each year, where their reproductive health care and family planning needs are grossly overlooked. Women in city and county jails frequently face barriers to accessing contraception, abortion, prenatal care, and disease screening and treatment. But preventive family planning can be improved in jails around the United States by implementing a few core tenets for those incarcerated there.

Although the direct results of improving such care have not yet been studied, it seems a safe guess that releasing healthier, more empowered women with control over their fertility would have positive outcomes for them and the families and communities to which they return.

The U.S. Department of Justice reports that the female jail population has been the fastest-growing correctional population. In 2012, women accounted for more than 26 percent of all persons arrested, primarily for drug-related charges. Regardless of the growing rate of female incarceration, the National Commission on Correctional Health Care has stated that women’s sex-specific health-care needs remain unmet due to their minority status in a male-dominated jail population.

There are no federally mandated guidelines for women’s health care in jails. Correctional health-care arrangements vary; contracted providers may deliver health services at jails on site, or incarcerated persons may be transported to local hospitals or clinics for care. Often, these health care arrangements do not include appointments with obstetrics and gynecological health providers. The scholar and lawyer Kendra Weatherhead argues that the medical inadequacies incarcerated women face infringe on their rights established in the Eighth and 14th Amendments.

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Although some members of the public may believe that contraception and other reproductive care needs aren’t necessary because of facilities’ sex-segregation, discontinuing women’s birth control and not providing contraceptives before release may increase the likelihood of women experiencing an unintended pregnancy post-incarceration. Jails are different than prisons in that they are designed for short-term stays of people in pretrial detention or who have been sentenced to less than one year for low-level felonies. The average length of stay in America’s jails is around 30 days, but while jail time is short, it is also frequent. Recidivism rates are alarmingly high in the United States—half of women who have been incarcerated return to jail at least once within three years after their release.

Unfortunately, many women have a revolving-door experience with incarceration. An unintended pregnancy may further complicate a woman’s efforts to meet her probation or parole requirements; thus, helping women avoid unintended pregnancies may lead to a reduction in recidivism, or at least a reduction in women returning to jail with unwanted pregnancies, for which they may be unable to decide the outcome.

Overall, most women in jail are between the reproductive ages of 18 and 45; are sexually active; and already have children, for whom they are the primary caregivers. It is also estimated that 25 percent of incarcerated women are either pregnant or gave birth in the year prior to their arrest. Compared to women who have never been arrested, women with a history of involvement in the corrections system experience higher rates of unintended pregnancies, abortion, sexually transmitted infections, and domestic and sexual violence—again displaying the need for improved health care in jails.

To assess women’s family planning needs and desires for contraception, the following recommendations should be initiated in all local jails housing women.

Upon booking into jail, all women should be asked if they are sexually active with men and currently using a method of birth control.

If she is using a hormonal birth control method, ensure it is continued. Women incarcerated in U.S. jails are subject to discontinuation of their current contraceptive methods because of an assumption that birth control is an unnecessary medication in a sex-segregated jail. Generally, women experiencing incarceration are not given previously prescribed birth control pills, or kept on schedule with other hormonal methods such as Ortho Evra (the patch), NuvaRing (the ring), or Depo-Provera (the shot). In the case of managing a health issue such as endometriosis, a woman may be allowed to remain on birth control, but even then, discontinuation is common. This practice carries risks: Because hormonal birth control can take time to become effective, this puts women at risk of unintended pregnancy if they have to reinitiate birth control after release rather than continuing on a jail’s prescription. Furthermore, women’s health insurance and income are suspended during incarceration, which could further postpone a woman’s re-initiation of birth control while she waits for her insurance to activate or a first paycheck and an appointment with a family planning provider.

All reproductive-aged women should be asked if they are interested in initiating birth control during their jail stay.

An unintended pregnancy after incarceration could hinder a woman’s ability to successfully reintegrate into her community and increase her likelihood of returning to jail. After incarceration, most women have children they need to care for or regain custody of, and they often have to find housing and jobs—things that an unintended pregnancy could make more complicated. Most incarcerated women are sexually active and plan to have sex with male partners soon after their release and hope to avoid unintended pregnancies. However, women who are incarcerated are more likely to come from poor communities where access to contraceptive education and services is limited. Because health care in jail is subsidized, women experiencing incarceration who wish to could receive free family planning counseling and services, especially effective, reversible, long-term methods such as the arm implant, Implanon, or intrauterine devices such as Mirena, Skyla, Liletta, or ParaGard—methods that are especially difficult for disadvantaged, uninsured women to access in the community. At least two jails in the United States are providing incarcerated women with access to contraception during their stay, one in Rhode Island, the other in San Francisco, California. But two facilities on opposite sides of the country are not nearly enough.

If a woman had unprotected sex within five days prior to arrest and is eligible and interested in taking emergency contraception, it should be offered to her.

A 2009 study surveyed women within 24 hours of their arrest in San Francisco. They found that 29 percent were eligible for emergency contraception based on the above guidelines, and among those women, almost half were willing to take emergency contraception if it was offered to them in jail. Additionally, 71 percent of all women surveyed said they would accept an advance supply of emergency contraception upon release from jail. The researchers estimate that access to emergency contraception at time of arrest and upon release could potentially benefit more than 750,000 women entering the criminal justice system every year.

Administrators should establish whether a woman is currently pregnant or if she would like to take a pregnancy test.

The American Congress of Obstetricians and Gynecologists states that at any given time, approximately 6 to 10 percent of incarcerated women are pregnant, many of whom find out they are pregnant in a correctional facility. Unfortunately, pregnant women in jail are inconsistently counseled on their options for pregnancy outcome and access to termination services. Incarceration impedes women’s ability to access abortion in the case of unintended pregnancy and causes additional stress to women who desire to deliver and parent. If a woman is pregnant, she should be asked what her intentions are for the pregnancy outcome and should be provided with resources to accomplish her intentions. Women’s rights to prenatal care, humane treatment, and abortion services do not cease because of incarceration; however, incarceration greatly complicates their access to such services. This may result in pregnancy and delivery complications or a woman being forced to continue an unwanted pregnancy because she was unable to access an abortion.

If women want to become pregnant after release, they should be offered preconception counseling, prenatal vitamins, and information about parenting resources, such as Children’s Health Insurance Plan (CHIP) and Women, Infants and Children (WIC).

Women with a history of incarceration often face pregnancy complications and deliver low-birth weight babies due to poor prenatal nutrition or mother’s drug use. Providing women with resources and services promoting healthy pregnancies benefits women, their children and communities.

The fight for reproductive rights is difficult enough for women who have never experienced incarceration—the millions of women who enter U.S. correctional facilities have it worse and the problem is growing. We must challenge the system of mass incarceration occurring in America and fight to keep women out of jail for nonviolent offenses through advocating for better substance abuse treatment and alternatives to incarceration. Unfortunately, women already in these facilities often have few resources to advocate for themselves. We must engage with jail administrators and local legislators to ensure incarcerated women have access to reproductive health-care services and family planning resources. Jails are our jails. People from our communities are held there, and our money funds what they do and don’t have access to.

It is our responsibility to ensure reproductive rights and autonomy for those behind bars.