Obstetric Fistula is a Physical & Mental Health Priority

“It’s been three years now, I can’t wear underwear, urine is always leaking. I have developed sores on my genitals that aren’t healing because of the moisture. I dread going out in public.

The last time I went to a gathering, people distanced themselves from me because of the bad smell. I repelled them. I’m confined to this house so I can bathe each time I soil myself. My entire family believes I was cursed, they say no one has ever had a disease like mine before.”

Nyaradzai is a 19-year-old living in my community in Mashonaland, Zimbabwe. She is one of many women suffering from obstetric fistula. 

Like many others, Nyaradzai has been unaware that hers is a condition that needs medical attention. She tells me her story:

“Three years ago, I dropped out of school. I was pregnant. My parents chased me from my home, so I went to stay at my boyfriend’s house. He was still in high school too, but his parents accepted me. I stayed there for six months. 

My baby died while I was in labour. It took me 6 hours to get to the nearest clinic – I was walking because my in-laws couldn’t afford to hire an ambulance to take me there. When I arrived, the nurses ignored me. In fact, they scolded me for getting pregnant at such a tender age. I was 16 at the time. While I was in labor, I passed out. I can’t recall what happened, but when I gained consciousness, I was in so much pain.

When my in-laws heard that I had delivered a stillborn baby, they called me a witch and returned me to my parents’ house. My problems started a few days later.

At first, I thought I just wasn’t making it to the toilet in time, but I was also wetting the bed at night. Now when I go to sleep I take a cloth and place it between my legs and put a plastic sheet underneath me so I won’t wet the bed. I can’t wear underwear because of the sores on my genitals.”

Nyaradzai’s story could be the story of many women living with fistula in Zimbabwe.

Fistula is a silent condition, and as a result many women are suffering in silence. Huge numbers of people are not aware of what it is or what it means for women.

A fistula is a passage or hole that has formed between two organs. Obstetric fistula is an abnormal opening that develops between the birth canal and the urinary tract. It is the primary type of fistula affecting women in developing countries.

Obstetric fistula is caused by lack of access to quality obstetric care, particularly prolonged and obstructed labour without treatment. Young girls can be at high risk, as their birth canals are still narrow. The head of the baby causes a tear between the birth canal and the bladder or rectum which, if not surgically repaired, leaves women incontinent.

2 million women in sub-Saharan Africa, Asia, the Arab region, and Latin America and the Caribbean are living with fistula. 

As Nyaradzai has experienced, the social isolation associated with physical symptoms can have significant mental health consequences. Obstetric fistula is almost entirely preventable, and its prevalence in the world is a sign that health systems are failing women.

I share Nyaradzai’s story today, on International Day to End Obstetric Fistula, to try to break the silence.  

It is important that we talk about fistula, teach communities about it and encourage women to help one another through education, empowerment and delaying marriage and child bearing.

Read more on girlsglobe.org and join the conversation online using #EndFistula.

Obstetric Fistula and the Sustainable Development Goals

The UN General Assembly convenes in New York this week. On the agenda: discussion of the first Sustainable Development Goals Report, published in July 2016, which notes impressive gains made over the last few decades. But it is also a reminder that these gains aren’t shared by all.

“Between 1990 and 2015, the global maternal mortality ratio declined by 44 percent.” —The Sustainable Development Goals Report 2016

In Bangladesh, where Fistula Foundation actively funds fistula treatment, the maternal mortality ratio decreased by 69 percent between 1990 and 2015. But in rural areas of Bangladesh, where there is limited or no access to health facilities, unattended home births are still common, putting women at risk for death or injuries during childbirth. With over 65 percent of the country’s population living in rural areas, that means many Bangladeshi women are still at risk.

Women like Ayesha.

02_ayesha_fistula_patient_bangladesh

Ayesha’s story

Ayesha labored at home for seven days. She desperately needed medical care, but there was no way to reach help. Stormy weather made it impossible to leave the small island where she and her husband lived in southern Bangladesh.

She finally delivered a stillborn baby. But her ordeal wasn’t over. Just one day later, she noticed she was leaking urine. The long, traumatic labor had caused an obstetric fistula, a debilitating childbirth injury that leaves women constantly leaking urine or feces—or sometimes both. The only way to repair the injury is through surgery.

Like other women who either don’t know their condition is treatable, or who can’t afford treatment at a private facility, Ayesha suffered for years. After her husband took a second wife and stopped supporting her, she moved in with her parents. Neighbors she once called friends began to taunt her because of her smell. She felt helpless and alone.

This nightmare happened nine years ago. Today, Ayesha is only 21 years old.

03_infographic_50_women_waitMore than numbers

Globally, there are more than 1 million women living with obstetric fistula, with new cases occurring all the time. Surgery to repair the injury costs, on average, less than $600 and takes about an hour. Despite the relatively low cost, the best available estimates show that roughly 20,000 of these surgeries are performed each year. For every woman who receives treatment, 50 more still wait.

But this problem is not only about statistics. It’s about real people. Young women like Ayesha. She’s someone’s daughter, someone’s wife, someone’s mother, someone’s sister.

Over the last 15 years, maternal health has improved globally, but, for some women, it’s as if time is standing still.

No one left behind

“Leaving no one behind is the overarching principle of the 2030 Agenda.”  —Wu Hongbo, Under-Secretary-General for Economic and Social Affairs, The Sustainable Development Goals Report 2016

04_buildhope4bangladeshFor nearly two decades, Hope Hospital, our partner in southern Bangladesh, has been quietly working to provide free or inexpensive medical care to thousands of underserved women and children in rural areas around Cox’s Bazar. They began offering fistula surgery in 2011, and have so far changed the lives of more than 200 women suffering with fistula. In this region of 2 million people, their small facility remains the only routine provider of fistula surgery.

Which is why we believe in funding the fistula ward of their new Hope Maternity and Fistula Center. Once built, this 6-floor facility will allow Hope to treat more women who are suffering, and will also help prevent injuries like fistula by providing family planning, antenatal care, emergency obstetric care, and midwife training.

Thanks to the dedicated staff there, women like Ayesha have hope for the future. Once she learned that treatment was available at Hope Hospital, Ayesha was finally able to get the help she needed. Although her case was very complex and she endured multiple surgeries, one of her two fistulas has since been repaired, and she will soon undergo surgery to heal the remaining fistula.

Hope Hospital is reaching women who have been left behind. With this new facility, they’ll be able to treat even more women who need care. You can be a part of that, too. Through September 30, every dollar you give will be used to build and support the Hope Maternity and Fistula Center in Bangladesh.

Join us on Twitter by following our campaign hashtag #BuildHOPE4Bangladesh.

Cover Photo: Mother and child outside Hope Hospital in Cox’s Bazar, Bangladesh. Credit: Jessica Love

Follow Fistula Foundation on Facebook or @Fistula_Fdtn on Twitter.

Overcoming Treatment Obstacles in Nigeria

Earlier this month, the UN released its final report on the Millennium Development Goals. Progress in MDG 5, improving maternal health, ultimately lagged behind the others.  Far too many women in the 21st century are still dying during childbirth, and not enough are delivering in the presence of a skilled birth attendant. For every woman who dies during childbirth, at least 20 more suffer from devastating injuries like obstetric fistula, a condition that results from prolonged obstructed labor and renders a woman incontinent.

So why are so many women delivering on their own, without skilled assistance or emergency obstetric care? Why are women still developing obstetric fistulas, when we know it’s a condition that can be prevented and should no longer exist? Some of the main hurdles are due to poverty – women may live far away from the nearest hospital, particularly in rural areas, and transportation can be too expensive. Still other hurdles have to do with healthcare infrastructure, or, perhaps more appropriately, a lack thereof: for women who do make it to a hospital or health center, the facility might not have the necessary supplies or expertise to help her deliver safely.

Women may also face specific challenges depending on which region they are from. In Nigeria, for example, particularly in the rural northern region, there are a number of barriers that prevent women from accessing treatment. Understanding these barriers is important, as Nigeria has the world’s largest burden of obstetric fistula (estimates start at 10,000 new cases every year) and one of the world’s highest rates of maternal mortality.

In northern Nigeria, early marriage is common, depriving girls of their chance to stay in school and thrive, and women often cannot access health services or medical care without permission and/or the presence of a male relative. If a woman goes into labor while her husband is away, for example, she may have to wait days before she is allowed to receive treatment at a health center.

The Boko Haram crisis adds another layer of difficulty to the situation in northern Nigeria. Fear and insecurity continue to grow as these conservative militants terrorize the region through bombings, kidnappings and other acts of violence. Women may be afraid to leave their homes as a result, preventing them from accessing vital health care services before, during and after childbirth.

In early July, Boko Haram attacked a mosque and restaurant in the city of Jos, claiming nearly 50 lives. Jos is the home of one of our partners, Evangel Vesico-Vaginal Fistula Center. There, heroic doctors and staff work tirelessly in the face of these extreme challenges to restore the health of Nigerian women.

The center’s lead surgeon, Dr. Sunday Lengmang, is passionate about women’s health. After undergoing on-site training, Dr. Lengmang officially joined the Evangel team in 2004 and has since performed hundreds of fistula repair surgeries each year along with his team. He also trains other surgeons and health workers in fistula care, and helped develop a curriculum for midwives on managing labor effectively and preventing fistula.

Staff from the center conduct regular outreach sessions throughout the year, venturing into rural areas to raise awareness about fistula and help identify new patients who may not have known treatment was available. The center has also started a ‘men’s group’ for husbands of fistula patients, who are encouraged to engage in dialogue with their male colleagues on providing care and support to women in the community who are suffering with fistula.

Evangel Center has performed nearly 10,000 surgeries since it opened its doors in 1992. Fistula Foundation is proud to support Dr. Lengmang and the center’s life-changing work!

More Than a Number

This week, the international aid world will convene in New York City during the United Nations General Assembly to discuss data, procedures, progress or perhaps lack thereof. But it’s important to remember that behind all of these facts and figures are women like Shefali*.

At age 20, Shefali was a happy wife and mother of a beautiful son. Like most women, when she became pregnant with her second child she was excited about expanding her family. She went into labor at home alone, without access to a skilled birth attendant, as do more than two thirds of women in Bangladesh. After enduring a day of excruciating labor she felt that something was wrong. She knew that her baby had already died inside her womb. Her husband took her to the hospital where the stillborn baby removed, but this was just the beginning of Shefali’s suffering.

Not long after, Shefali began to leak urine: days of obstructed labor had caused an obstetric fistula, an injury that caused her to become incontinent.

Photo Credit: HOPE Foundation for Women & Children of Bangladesh
Photo Credit: HOPE Foundation for Women & Children of Bangladesh

Obstetric fistula is a terrible injury happening to some of the poorest women in the world. As in Shefali’s case, it occurs when a woman’s labor becomes obstructed and constant pressure from the fetus causes tissue to die. As a result, a small hole is created that causes the woman to become incontinent. The smell of her incontinence often spurs a woman’s husband to leave and community to abandon her – and even worse, she often thinks it’s her fault, believing she’s cursed. Her child usually does not survive.

The most shocking part? The surgery that can completely transform a woman’s life costs as little as $450 and often takes less than an hour to complete. Yet there are women like Shefali with fistula today who have lived with this condition for decades because they do not know treatment is available or because they cannot afford to access it.

Recently, Shefali heard about the free obstetric fistula repair services offered by HOPE Hospital for Women and Children of Bangladesh, a Fistula Foundation partner. She arrived at the hospital in Cox’s Bazar for treatment, eager for the surgery that would finally cure her and allow her to once again walk with pride through her village, free from the burden of obstetric fistula.

Obstetric fistula used to be common in the developed world until the early part of the 20th century – in fact, a fistula hospital once stood on the site of today’s Waldorf Astoria Hotel in New York – but thanks to the widespread availability of emergency obstetric care and emergency interventions like C-sections, fistula is now extremely rare in the U.S. and other industrialized nations. But, in places like rural Bangladesh, where Shefali gave birth, there is too often no medical help available if something goes wrong during labor.

Today, Shefali is 40 years old. She suffered with obstetric fistula for 20 years, without any idea that her devastating childbirth injury could be treated through surgery. We know there are at least one million more women like her, who suffer from untreated fistula, and too many of those women have suffered for years.

Shefali’s life was transformed because true partners worked together: Fistula Foundation’s generous donors paid for the surgery she received through skilled hands from our trusted partners at HOPE Hospital. This week, as we all reflect on achievements made and significant work that remains to be done, let us pause for a moment and think about the individuals behind these spreadsheets and data points, and about the collaboration and partnership required of all of us to treat the one million women just like her who are still in need of help.

This post is written by Kate Grant, CEO of Fistula Foundation, a nonprofit that works to treat the childbirth injury obstetric fistula by funding treatment, surgeon training, and equipment that enables providers to give the very best quality of care to women who are suffering. To learn more, visit www.fistulafoundation.org or join the organization on Facebook or @Fistula_Fdtn on Twitter.

*Name changed to protect patient privacy.

Midwives: At the Center of Preventing Obstetric Fistula

This week, midwives from around the globe are convening in Prague at the International Confederation of Midwives (ICM) Congress to share best practices, new innovations, learn more about the current status of mothers and newborns, and inspire each other (and others) to action.

As midwives are at the center of caring for women, ensuring they have safe pregnancies and childbirths, they play a crucial role in preventing maternal mortality, as well as, maternal morbidities. The statistics of maternal mortality are devestating – nearly 300,000 deaths every year, and for every woman who dies, up to 20 women experience serious, at times life-altering, complications.

Obstetric fistula is a devestating childbirth injury due to prolonged obstructed labour, leading to the leakage of urine and/or feaces. “It is a double tragedy, as in most cases the woman has a stillborn baby,” said Dr. Hamid Rushwan, Chief Executive, FIGO, at a session on the subject. As the moderator of the session, Dr. Mulu Muleta, an Ethiopian surgeon who has dedicated her career to treating women with fistula, highlighted the challenges that women face when suffering from fistula – ranging from social exclusion and stigmatization to becoming unable to perform daily tasks. She stated, “it is such a devastating injury, some women believe they have been cursed by an evil spirit”.

There is not enough research on the amount of women living with fistula. Women who live in remote areas may not be counted and the prevalence of fistula is hard to estimate. Some estimates report that as many as 2-3 million women are living with the condition. Dr. Rushwan called them “guesstimates”.

Midwives at the center of caring for women’s health

Prior to and during women’s reproductive age, midwives are essential to empowering women to take infomed decisions about their health – whether it is providing adolescent health services, supporting access to family planning for delaying first age of pregnancy and spacing births, or advocating for safe pregnancies and childbirth. Midwives also play an essential role to prevent obstetric fistula.

Sister Marit Legesse speaking at the ICM Congress.  Photo Credit: Johnson & Johnson
Sister Marit Legesse speaking at the ICM Congress.
Photo Credit: Johnson & Johnson

As many of the indirect causes of fistula are related to socio-demographic factors such as child marriage, early pregnancies and lack of education, midwives have an essential role in educating, raising awareness and changing social norms.  “Midwives need to be trained to care for women with sensitivity to these social factors” highlighted Sister Marit Legesse, Ethiopian midwife and Vice Dean of Hamlin College of Midwives.

These are some key things midwives can do to prevent fistula:

  • Educate adolescent girls, parents and community members on the risks of early pregnancy and unattended deliveries
  • Ensure women have adequate nutrition and support the immunization of girls early in childhood
  • Improve access to reproductive health services and information, including family planning
  • Ensure pregnant women have access to maternal health services and information, and learn to seek care when experiencing complications
  • Provide competent care during delivery
  • Use of a partograph during labour, to identify prolonged obstructed labour
  • Advocate for emergency obstetric care facilities and skills
  • Promote women’s empowerment, including girls’ education

Midwives can also:

  • Dispell myths about obstetric fistula and inform that it is entirely preventable
  • Provide a safe space for women who have experienced fistula and listen to them
  • Help women with experience of fistula plan pregnancies and give birth at hospital

Obstetric fistula is a preventable and treatable condition. Educated midwives have the capability to perform nearly 90 percent of the essential care for women and newborns before, during and after delivery. When we invest in midwives, we invest in saving lives and preventing disabilities. When we invest in midwives, we invest in healthy women and children, enabling our communities to thrive.

A lot is being done to prevent and treat women with fistula. Here is a snapshot of some amazing work done in Ethiopia and Tanzania, captured by Johnson & Johnson. 

Featured image: An Ethiopian woman recovers from life-changing fistula surgery at the Hamlin Fistula Hospital in Addis Ababa, Ethiopia. Photo Credit: Lucy Perry/Hamlin Fistula Relief and Aid Fund Australia

Get Engaged:

Dancing with the Fighters

Sheema Kermani is a dancer. Shershah Syed is a doctor. 

They are fighters from Pakistan. Both have waged a ceaseless crusade for decades in a country they cling to as home, despite threats against their lives.

If you live in any of the 12 cities they have targeted in USA, you stand a good chance to meet them.

The doctor and the dancer are amazingly alike in their crusade of social activism, aimed to create awareness in a society sickened by all the ills, which plague third world countries.

Both Sheema and Dr Shershah Syed have won recognition at home and abroad for their achievements in their respective fields as they continue their war for women’s rights, which, as Sheema says, are human rights. Under the banner of a women empowering organization, Tehrik e Niswan (the women’s movement) founded by Sheema and a group of women in 1979, she carries on a dialogue with her audience through dance and drama, seeking to end gender discrimination, prejudices and injustices on all fronts. She takes her plays into downtrodden, poverty ridden slums with an intrepid zeal, which is amazing to behold. The response she gets is worth the guts it takes.

In a country with a prejudice against dance, Sheema has continued to pass on her legacy as a performer and a teacher to her students ranging in age from six to sixty. During a visit in 2010 to Karachi, I was able to see, what in many ways was a major milestone in her journey, an entertaining, educative, week long festival of dance and drama. She had dedicated that festival to peace, disarmament and to her earliest dance Guru, Ghanshyam. Ghanshyam was there for that festival, his first visit back to Pakistan after his forced exit 27 years earlier. That exhilarating reunion of teacher and the taught was also to be the last, as Ghanshyam passed away in 2012. She had titled that festival ”tilism”, which means magic.

Magic it was. The magic of thoughts and ideas, transformed into music, dance and drama, crossing boundaries of time and space, a show reflecting a commonly shared cultural heritage that binds India, Pakistan and Bangladesh.

It was during that same visit of mine that I saw a collaboration between the dancer and the doctor in a stage play “hur aurat hai anmol”, or every woman is priceless, which highlighted issues of gender discrimination, child marriages and the lack of maternal care for the poor. A lack that results in 30,000 maternal deaths each year, a shameful figure, which Shershah has sought to bring down ever since he was shocked on seeing maternal death for the first time when he returned to Pakistan in 1989 after his postgraduate study abroad.

Even more horrifying was the realization that no treatment existed in Karachi for a debilitating early marriage, childbirth related injury called Obstetric Fistula that leaves young women unable to control the passing out of their body wastes. As many as 2 million women in third world countries suffer in shamed silence from this condition, forced into isolated, miserable lives, needlessly and for no fault of their own.

Shocked but undeterred, Dr. Shershah went to Ethiopia to train at the Addis Ababa Fistula Hospital to get the training needed to help such women patients. Over the years Dr Shershah has continued to expand the treatment facilities available.

Never one to mince words or refrain from voicing the truth, Shershah says:

my patient had waited for 41 years for treatment, and all it took me was just 21 minutes to give her back her dignity.

Dr.Shershah’s dream child, Koohi Goth Hospital, a center for obstetrics and gynecological care, started operating in 2004. Initially with funds from his family and friends and the UNFPA. Koohi Goth is one of the few large and well-equipped facilities in Pakistan which specialize in treating obstetric fistula. Apart from providing modern quality care around the clock to women patients totally free of cost, the hospital also fulfills Shershah’s priority to train the midwives, nurses and technicians needed to extend and ensure the care every woman patient should get regardless of her social or economic level.

As Dr. Shershah explains,

Every day some 250 women come to the hospital in OPD (out patient department). Whichever woman needs surgical intervention gets surgery without any cost to them.

Every year the number of patients increases. Shershah’s dream now is to expand this center for women’s diseases to a General Hospital for poor women, and cover other ailments including mental illnesses which is still a hush-hush subject.

Another goal is to increase the number of beds, from 130 to 250. Funds raised at various levels keep this one of a kind visionary hospital going, which is what has brought Sheema and her loyal troupe along with Shershah on this first ever fundraising multi city tour in USA. If you get to dance as it were, with these two fighters from Pakistan, count yourself lucky.

These two are both one of a rare kind, who have taken on the responsibility on their own selves to do what has to be done, fighting for what is just, right and required-regardless.

 

The fundraising tour has already made it to Washington DC, Atlanta, and Orlando. The events in the various US cities include dinner and traditional Pakistani dance. Upcoming cities include: New York CityDetroitChicagoSt. LouisDallasHoustonAustinLas VegasLos AngelesFremont. Don’t miss it!

big_Flyer-8

Learn more about obstetric fistula at endfistula.org.

The post has been modified since it was first published. This post has the goal to raise awareness of the current fundraising tour in USA of Pakistan’s National Health Forum, to raise funds for Koohi Goth Hospital in Karachi, Pakistan. See more here.