Drawing Out Obstetric Fistula

Post Written By: Abbey Kocan, Executive Director 

The first time I met a woman who was recovering from obstetric fistula surgery, I was faced with a reality I had been sheltered from for far too long. Four years later, while the level of awareness around this condition in the developed world has grown, there is still a lot of work to be done before this critical global health challenge is given a permanent place in the spotlight.

Imagine if, while giving birth, you or your partner faced a complication requiring emergency medical care. Imagine if that care was unavailable, and you lost your baby. You grieve for the loss of the child who was so close to living. You, or your partner, suffer silently, trying to find a way to cope with the physical trauma that leaves you incontinent, unable to work and further devastated by judgment and abuse at the hands of your friends and family.

Photo 2-Kupona
Artwork by: Jac Saorsa

Kupona Foundation’s fistula program has treated patients as young as 12, and as old as 82. Imagine living like this for decades, certain that your pain will continue for the rest of your life. Imagine if this happened to your teenage daughter.

A Silent Tragedy

At Kupona Foundation we often refer to obstetric fistula as a silent tragedy, affecting members of our global community who struggle to make their voices heard even before they are faced with unimaginable trauma. It is made even more difficult to endure by the myths and misconceptions that are held up as fact in their communities. The women living with this condition are hidden from view. As a result, those with the power to change things are oblivious to their struggle.

The site of the last fistula hospital in the United States is now the Waldorf Astoria hotel in New York City. In the early 20th century, the need for fistula treatment in the U.S. dwindled as the quality of our healthcare services improved. Demand dropped to the point where the hospital could be converted into a luxury hotel. This is the dream of all fistula care providers across the world. That, eventually, they too will become obsolete.

Today, on the International Day to End Obstetric Fistula, Kupona Foundation, in partnership with Johnson & Johnson, UNFPA’s Campaign to End Obstetric Fistula, Fistula Foundation, New York University’s Kimmel Center for University Life and the College of Global Public Health, launch the Drawing Out Obstetric Fistula exhibition at the NYU Kimmel Center in New York City. The collection of work by artist Jac Saorsa is designed to shine a light on the experiences of women living with and recovering from obstetric fistula, to raise awareness about the condition, and to mobilize support for the programs and partnerships that work to restore women’s dignity. The women featured all received treatment from CCBRT, Kupona Foundation’s sister organization, at its Disability Hospital in Dar es Salaam, Tanzania.

Photo 3-Kupona
Art work by: Jac Saorsa

Since 2009, Kupona Foundation supporters have contributed over $1.3 million to the treatment and prevention of fistula. Together, we have rebuilt the lives of 3,987 women, and with our support CCBRT has grown to become one of the largest providers of comprehensive fistula treatment in the world. Our hope is that these drawings will open your eyes not only to the reality facing the women living with obstetric fistula, but also to the opportunity facing every one of us to change the status quo.

We imagine a world free from fistula, can you?

The Waldorf Astoria hotel is an iconic reminder that fistula can be treated, prevented and ultimately eradicated. All it takes is a community of like-minded, motivated individuals and institutions coming together and taking action. By attending this exhibition you will become a vital part of this community. Thank you in advance for your support.

Photo 4-KuponaThe Drawing Out Obstetric Fistula exhibition is free to the public from May 23rd-July 4th, Mon-Fri 9am-8pm, Sunday 1pm-8pm (closed Saturday) at the NYU Kimmel Center, Washington Square S, New York, NY. All visitors must present photo ID at reception.

Learn more about the exhibition: www.resilience.gallery

Learn more about Kupona Foundation: kuponafoundation.org

Life-Changing Surgery for Refugees in Kenya

Written by Lindsey Pollaczek, Fistula Foundation Program Director

It’s difficult to imagine what it would be like to live in Dadaab, the world’s largest refugee camp. Located on the northeastern border of Kenya, the camp is home to more than 300,000 people, mostly refugees from Somalia displaced by years of conflict and famine at home.

Iam in the middle of Ben Rawlence’s book City of Thorns, a disturbing look inside the lives of nine residents of this sprawling camp and the tremendous daily struggles they face. When I try to comprehend how much more difficult it would be to live in Dadaab with an obstetric fistula, a debilitating childbirth injury that leaves women constantly leaking urine or feces, it is a harrowing prospect. Over the six years I have been involved in this work, I have spoken with hundreds of women who have lived with fistula. Many endured painful, prolonged labor, lost their babies, and were abandoned by their spouses and isolated by society as a result of their condition.

Life-changing surgery

DrMutiso-fistula-surgeon
Photo credit: Georgina Goodwin

Since last May, through the Action on Fistula initiative in Kenya, Fistula Foundation has been able to support life-changing fistula repair surgery for 33 refugees living in the Dadaab and Kakuma camps in Kenya. With help from the National Council of Churches of Kenya, women have traveled from the camps to Jamaa Mission Hospital in Nairobi, where they can be evaluated by our fistula surgeon, Dr. Stephen Mutiso, and receive free surgery. I am deeply thankful for this partnership—without it, these women would likely have gone without treatment for much longer.

One woman’s story

Halima-fistula-patient
Photo credit: Lindsey Pollaczek

Recently I had the opportunity to meet three women from Dadaab and Kakuma who had just undergone fistula repair in Nairobi and were recovering in the ward. One woman’s story in particular moved me profoundly.

Halima* is a soft-spoken 25-year-old from Baidoa, in south-central Somalia. In 2013, she went into labor at home and was attended by a relative. This was the fifth child she had carried, although at the tender age of 23, already three of her children had died. She was in labor a long time without any progress—many days, it seemed—before she was eventually taken by her relatives to the nearest health facility. While at the facility, her experience turned from bad to horrific when fighters from al-Shabaab, the terrorist network operating in Somalia, stormed the health center and started shooting the doctors and staff who were attending to the women. She remembers being assaulted by al-Shabaab fighters who claimed they could deliver her baby and then attempted to do so. Halima could barely speak about this terrifying episode, but she remembers eventually escaping the hospital, without her baby—the child had been stillborn—only to realize that she was leaking urine. She had developed a fistula. Her husband divorced her. Injured and traumatized, it took her four months to be able to walk again.

Halima now lives in Dadaab with her only surviving son, 7-yeard-old Mohamed. Seeking treatment for her fistula, she traveled first to Ethiopia—more than 700 miles away—and eventually to Somaliland. But after traveling over 1,000 miles and undergoing multiple surgeries, she had experienced no relief. She decided that going to Dadaab would be her best hope for medical treatment and possibly a better life.

When I spoke with her, Halima seemed very nervous that the repair would be a success, and wiped away tears when she thought of the prospect of going through surgery again without a better result. I left the hospital that day with a heavy heart, knowing the difficult reality—not all fistulas can be completely repaired. I hoped and prayed that this wouldn’t be the case for Halima. She had already been through a hell I can’t imagine. I wanted so badly for a little bit of normalcy to be restored to her life.

Hope, in a word

Dadaab-storefront
Photo Credits: Georgina Goodwin

When I received feedback from the hospital a few weeks ago, I was nervous to open the document that would tell me if Halima’s surgery had been successful or if she was still leaking. Imagine the tremendous relief and happiness I felt when I read that word—a short and simple word but one that carries enormous importance for changing the course of Halima’s life: “Dry.”

*Name changed for privacy reasons.

Cover Photo: Women from Dadaab await fistula screening, 2015. Credit: Georgina Goodwin

Lindsey Pollaczek is the program director for Fistula Foundation, which works to provide treatment for obstetric fistula in more than 20 countries in Africa and Asia. In Kenya, she manages the Action on Fistula program, a three-year initiative to make a lasting impact on fistula by supporting free surgeries, surgeon training, and extensive outreach support to identify and refer patients for treatment. Action on Fistula is a program led by Fistula Foundation with generous funding support from Astellas Pharma EMEA.

Follow Fistula Foundation on Facebook or @Fistula_Fdtn on Twitter.

An Interview with Kate Grant and the Fistula Foundation

Girls’ Globe values the voices of the incredible organizations in our network. Over the next year, Girls’ Globe will continue to highlight the amazing work of these organizations and what they are doing to improve the health and well-being of women and children around the world. Last week, in honor of the International Day to End Obstetric Fistula we “sat down” with CEO of The Fistula Foundation, Kate Grant. Read the interview below and learn more about the they are doing to improve the the health of women around the world.

1. Earlier this week the G4 Alliance launched globally at the WHA in Geneva, Switzerland – an alliance in place to improve​ access to care in Surgery, Obstetrics, Trauma and Anaesthesia. What does this alliance hope to achieve and how is Fistula Foundation involved?

The goal of the G4 Alliance is to advocate for neglected surgical patients (i.e. those in low-resource countries) and to provide a collective voice for increasing access to safe, essential and timely surgical, obstetric, trauma and anesthesia care as part of universal health coverage. The numbers are staggering: Over two billion people lack access to basic surgical services worldwide with less than 4% of all operations being delivered to the world’s poorest countries. In fact, Africa has roughly 1% of the number of surgeons in the U.S. (Abdullah 2015). We know that far too few women in the developing world have access to timely obstetric surgery – that is why fistulas occur – and after the fact they face challenges in accessing the necessary surgery to repair their bodies which have broken by childbirth. Fistula Foundation is dedicated to ending that suffering through free, safe, and high-quality surgeries, which is why we are a proud member of the G4 Alliance and its vision to make sure all patients have access to the surgical care they need.

2. Saturday marked, the International Day to End Obstetric Fistula. Can you explain why it is so important to specifically invest in ending obstetric fistula and not just maternal health services in general?

New York Times columnist Nick Kristof has referred to women with fistulas as “ the lepers of the 21st century, among the most voiceless and shunned people on earth.” Obstetric fistula may not be the ‘sexiest’ issue out there, but as the most devastating of all childbirth injuries, it is one that deserves targeted attention and investment. Not only is a woman left incontinent and unable to control her bodily wastes, but 9 times out of 10 her baby does not survive and she is abandoned by her husband and ostracized from her community because they cannot stand her smell. Fistula is truly a symbol of global inequality and indeed should not exist. The cure is a surgery which, on average, takes 1 hour and costs $450. Doesn’t seem like much, but this 1 hour and $450 completely transform a woman’s life!

3. Are there any specific concerns or challenges that the community working towards ending fistula is currently facing?

There are a few specific challenges we face in ending fistula completely. One of the biggest challenges is a global shortage of trained surgeons. Because fistula has been nearly eradicated in high-income countries, it is no longer a relevant field of specialized training for most surgeons. The Fistula Foundation funds training programs led by international experts in nearly all of the countries in which we work. Surgeons are trained through the standard competency program developed by the International Federation of Gynecology and Obstetrics (FIGO), and we support them following their training to make sure they have the necessary resources to put their skills into practice.

Another big challenge is lack of awareness. Again, because fistula has been nearly eradicated in high-income countries, many people are simply unaware that the problem exists. It is a humiliating and isolating condition that affects the poorest and most vulnerable women in low-resource countries, many of whom don’t even know that treatment is available or are too ashamed to come forward. We fund outreach programs to help raise awareness in rural communities and identify these women who are too often hidden and ostracized from society.

4. How can the international community help to end Obstetric Fistula as a part of the post-2015 agenda.

The only way to truly end fistula is to treat existing cases while at the same time preventing new ones from occurring. In order to do that, every pregnancy and delivery must be safe – this means improving women’s access to pre-natal care and emergency obstetric services. ALL women need access to emergency obstetric care, regardless of which part of the world they come from. About half of the women who give birth in Africa each year do not have access to the emergency care they need, so that is really the key to any agenda focused on ending fistula.

Until the time comes where every pregnancy and delivery is safe, raising awareness is one of the most important factors in helping to end obstetric fistula. The issue has slowly started to creep onto the international agenda in a variety of forms, such as the Global Fistula Map we co-funded with Direct Relief and UNFPA, and the United Nations Campaign to End Fistula. In fact, in December 2014, a UN resolution was passed to intensify efforts to end fistula. Efforts like these help keep fistula on the radar – let’s keep up the momentum!

5. Can you share any news about the progress to end Obstetric Fistula?

The good news is maternal mortality rates have dropped dramatically and more women are delivering their babies with a skilled attendant present than ever before. The path to ending fistula is a long one, but we are making steady progress. Fistula Foundation has now funded more than 14,000 surgeries across 30 countries, meaning more women in more places have been able to access surgery than ever before. More surgeons are being trained than ever before as well, increasing the international capacity to reduce the global backlog of patients.

Our Action on Fistula program, a three-year, $2M initiative funded by Astellas Pharma EMEA designed to make a lasting impact on fistula treatment in Kenya, also shows promise in accelerating the progress to end fistula. It is the largest and most well-funded single program we have ever undertaken in any of the countries where we work, and we believe has the potential to be a roadmap for comprehensive fistula treatment in other countries and regions. Based on its success, we are working to establish treatment networks throughout Africa and south Asia in order to help surgeons collaborate better and ensure that women have access to timely, quality surgery.

6. How can our readers and audience get involved to help end Obstetric Fistula?

There are many ways to get involved! Become a fistula ambassador in your community or school by joining our Circle of Friends program and putting on an event. Play the game Half the Sky on Facebook, inspired by the book-turned-documentary, Half the Sky: Turning Oppression into Opportunity for Women Worldwide by Nick Kristof and Sheryl WuDunn. The game allows players to complete quests based on themes from the book that unlock real-world donations to Fistula Foundation and the surgeries we provide! Another great example is Allie Pape, a supporter recently used an opportunity on an email lottery called The Listserve to raise $2,500 and counting for Fistula Foundation. You can read more about her story on my Huffington Post page.

As we know, obstetric fistula is often a ‘hidden’ condition that far too few people know about. Follow us on Twitter at @Fistula_Fdtn and be sure to tweet us using the hashtags #EndFistula and #FistulaDay and let us know what YOU are doing to help end fistula and raise awareness. Or, make a donation in honor of someone you love, or take our #nopresentspledge, a pledge you can take multiple times a year to let friends and family know that instead of gifts, you’d prefer they make a donation in your name to give the gift of health to a woman in need instead.

Challenging the Status Quo in Tanzania: Accessible Healthcare

Photo Credit: Mark Tuschman
Photo Credit: Mark Tuschman

Blog post by Erwin Telemans CEO, CCBRT

For women in Tanzania, accessing quality, maternal healthcare services is difficult. Affording the journey to a hospital, and paying for treatment, is impossible for many women. Poverty contributes to an elevated risk of acquiring a disability or injury during labor. It’s a bleak picture. Women who do develop a disability face many more obstacles, including severe social stigma, which leaves women isolated and hopeless. Cultural conventions often render these women voiceless to make decisions for their health, or the health of their unborn child.

For the past nine years, I have been the CEO of Comprehensive Community Based Rehabilitation in Tanzania (CCBRT), a Tanzanian NGO represented in the USA by Kupona Foundation, our 501(c)(3) non-profit. With the support of our donors and partners, CCBRT and Kupona work to actualize a vision of a Tanzania where people have access to quality disability services as well as safe maternal and newborn healthcare. I am honored to introduce our organizations to this dedicated network of advocates for the empowerment of women and girls around the world.

Inspired by Emma Watson’s gripping address to the United Nations this September, I became the 20th man in Tanzania to pledge support for UN Women’s ‘He for She’ campaign. He for She’ represents everything CCBRT and Kupona embody. We believe that every individual deserves equal access to healthcare, education, and employment, enabling them to fulfill their potential. Ms.Watson’s message resonated with our own journey, particularly our efforts to challenge the status quo for Tanzanian women.

Photo Credit: Mark Tuschman
Photo Credit: Mark Tuschman

Every year in Tanzania, up to 3,000 women will develop obstetric fistula, a childbirth related injury that leads to chronic incontinence¹.

Why is obstetric fistula so devastating for women?

  • It is completely unnecessary.
  • It often results in abandonment by families and friends.
  • It causes incontinence.
  • In most cases it results in the loss of a baby.

At CCBRT and Kupona, we are doing everything we can to ensure that these women have access to the life changing treatment they need. As our friends at Global Citizen said recently, “There should be absolutely no reason why this is still a thing.” We’re using mobile technology to ensure that even the poorest woman can receive treatment by facilitating their transportation to the hospital. This video describes our TransportMyPatient program. Thanks to the generous support of our donors and partners, we provide treatment, food, and accommodation for fistula patients free of charge.

Treating existing cases of fistula will help reduce the backlog of women living without access to this dignity-restoring corrective surgery, but it will not solve the problem. The best way to prevent impairments like fistula is by increasing access to safe, quality maternal and newborn healthcare (MNCH). This is why CCBRT and Kupona are working in close partnership with the Government of Tanzania to make motherhood safe in Tanzania. This video introduces our MNCH program. Tanzania is one of the top 10 contributors to maternal death in the world². In Dar es Salaam, where we focus our efforts, the number of maternal and newborn deaths is alarming, despite the fact that 90% of births take place in a health facility³.

Our message is simple: all babies deserve the best chance to survive their first days, and every mother deserves to greet her newborn child.

Integrated throughout all of our maternal and newborn healthcare services is an effort to include men in the process. He for She. Maternal healthcare, pregnancy, and the risks that come with childbirth, are not solely women’s issues.

It is impossible to introduce CCBRT and Kupona Foundation in a single post. Our work covers a comprehensive spectrum of service delivery, capacity building, health system strengthening, advocacy, and health education in both the disability and maternal and newborn healthcare arenas. If you stay tuned to Girls’ Globe we will share more of our story, and update you with new developments from Tanzania. Working together with partners, supporters, and advocates like Girls’ Globe, we can change the status quo in Tanzania to ensure that motherhood and childbirth is a cause for celebration, not a tragedy.

Follow @CCBRTTanzania and @KuponaFdn on Twitter to hear more about our 20th anniversary plans and to learn how you can show your support! #CCeleBRaTe20

¹ Bangser M. Obstetric fistula and stigma. The Lancet. 2006

² ‘Trends in maternal mortality 1990-2010’, WHO, UNICEF, UNFPA and the World Bank Estimates, 2012

³ 2010 Demographic and Health Survey,National Bureau of Statistics, Dar es Salaam, Tanzania. April 2011

Uncovering the Epidemic of Obstetric Fistula

Obstetric Fistula is very real. It is the reality of an estimated 2 million women who have endured pregnancy and prolonged obstructed labour. These women often deliver their babies without a midwife and may lose their baby during childbirth. To make matters worse, these women suffer from incontinence, leaking urine or faeces, and sometimes both. In many cases, women are seen as outcasts by their family, neighbours and society. Women with fistula suffer pain and loneliness, which may lead to shame, humiliation and psychological instability.

Obstetric fistula—a hole between the bladder and the vagina or the rectum, or both—is a childbirth injury caused by prolonged, obstructed labour, without timely medical intervention; typically, a Caesarean section. The baby almost always dies during labour. (Definition by the Campaign to End Fistula)

The good news is obstetric fistula can be prevented and treated. Through surgery, women can be physically healed. Women who have access to counseling and emotional support can socially reintegrate into their communities and dignity can be restored.

The surgeons operating on women with fistula are passionate individuals. Surgeons not only help restore the lives of women who have lost their dignity, they also work in the most low-resource (and sometimes dangerous) settings to reach the women (and girls) affected by fistula.

However, the amount of women who receive treatment and care is limited, leaving a large backlog of women who are forced to continue living with this condition. It is estimated that 50,000 to 100,000 new cases of fistula occur each year.

Odette Kusiku Mbaku Maswaku, 40 years old. Odette was in labour for 3 days and developed obstetric fistula.  Photo Credit: Robin Hammond/Panos. Kinshasa, DR Congo. March 2010 - UNFPA
Odette Kusiku Mbaku Maswaku, 40 years old. Odette was in labour for 3 days and developed obstetric fistula.
Photo Credit: Robin Hammond/Panos. Kinshasa, DR Congo. March 2010 – UNFPA

Fistula is part of an underlying global problem of inequality.

Approximately, 290,000 women die each year during pregnancy or childbirth. For every woman who dies 20 more are affected by life-altering morbidities like fistula. In addition, 2.9 million newborns die and an estimated 2.6 million babies are stillborn each year. Most of these deaths occur in the lowest-income countries and in areas affected by conflict and other emergencies.

Geographical inequalities for women exist due to a difference in access, availability and affordability of healthcare, family planning, and education. Women, girls and families in the poorest areas are the most at risk of becoming part of these horrifying statistics.

These women are more than a statistic!

Women are struggling to survive with obstetric fistula, and families are ripped apart when losing a mother in pregnancy or childbirth. Due to where they were born, it is a very real and occurring scenario – the risk of dying when giving life. But these women are pillars of their families and societies, and are the key to unlocking development and eradicating extreme poverty.

The large majority of maternal and newborn deaths can be prevented! We can not let more women and newborns die and suffer needlessly, hidden away under poverty and conflict.

As we are nearing the due date of the Millennium Development Goals, we must ensure that our leaders take action for the future. The health and rights of women and newborns must be an integral part of the Post-2015 agenda, and a top priority for our world today.

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
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

Join the Conversation

Join Girls’ Globe and partners as we continue the conversation throughout the year on the importance of stepping up progress for the health and rights of women, girls and newborns. Together with Johnson & Johnson, FHI 360, and many partners from around the globe, we will be sharing live coverage from global meetings and news on new reports in the months ahead.

  • Raise your voice using #EndFistula
  • Sign up to receive Daily Deliveries during the ICM Congress, PMNCH Partners Forum and UN General Assembly Week.
  • Follow the online conversation on the importance of midwives and live coverage during the ICM 30th Triennial Congress using #ICMLive
  • Follow the online conversation on maternal, newborn and child health, and live coverage of the PMNCH Partners Forum using #PMNCHLive

Additional Resources

Musicians Unite Against Fistula

The Campaign to End Fistula, in collaboration with the Fistula Foundation and Mercy Ships, have been privileged with a brand new song by several well-known Senegalese singers, put together especially to raise awareness of obstetric fistula. The song was presented at the launch of the International Day to End Fistula, with great success. Enjoy it and let the music spark an action to support the work to end fistula.