BLOGS

What is Obstetric Fistula?

YoungGirl

By Madison Miller, One By One Young Global Leader 2013/14

What is obstetric fistula? It is a tragic medical condition and reason that women become social outcasts.  It is also a problem with a solution.

Before becoming involved with One by One’s Young Global Leaders Program, I understood the medical explanation of fistula. I knew that it was a hole in a woman’s bladder or rectum caused by prolonged obstructed labor. I did not realize, however, its far-reaching effects –not just on the women with the fistula, but on their own families and communities.

Many women and girls who live with their fistula untreated leak urine, are poor, and live in rural communities far away from hospitals. As a result, when women develop a fistula, they often do not go to the doctor because it would cost too much money and be too much of a struggle to get there.  Sometimes these women don’t even know what is wrong with them. In fact, many think they are being punished by God for something they did.

Additionally, many women are cast out by their families, friends, and community because their fistula results in an awful, unbearable odor. In some areas of Western Kenya, where One By One works, communities believe that women with fistula have a curse, so women are deserted by their husbands.

In the Young Global Leaders Program, I have heard stories about women who’ve experienced fistula and how their lives are changed for the worse.  Fistula is not just about a hole in the body, it ends up being about education, money, child marriage, medical care, and culture. In some parts of the world, women and girls are not treated as equal to men and boys. Girls go without an education and are not respected. Families also marry their young daughters when they are just little girls in order to receive a dowry, or a bride price. The family may be stuck in financial hardship and see girls as less valuable than boys.  This and other issues women and girls face situations contribute to the high rates of fistulas in developing countries.

Fistula is an issue that is not commonly talked about in the United States because women give birth in hospitals where they have access to advanced medical care. For women in developing countries, the nearest hospital may be  hours away and they have no means of transportation to get there.

Part of One by One’s mission is making women aware of fistula and that it is a treatable medical condition. One By One works with women in Kenya, many who have had their fistulas repaired by their program, to spread awareness, allowing women to learn about fistula from women who have been in their situation.  These are their friends and neighbors, women they know and trust.

One By One is unique because it empowers fistula survivors to become advocates and active members of their communities – putting women who were ostracized into positions where they are in charge and have the power to change their communities. Through their work, One by One has shown that fistula is more than its medical definition; it includes many social and cultural issues. The first step to eradicating fistula is awareness.

Madison Miller is a Junior at Holy Names School in Seattle, Washington and one of 11 Young Global Leaders, ages 13-17, in One By One’s nine-month global health education and advocacy training program.

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A Young Global Leader’s Perspective

group in front of capitol building 72dpi

By Anna Thompson, One By One Young Gloabal Leader 2013/14

Being a Young Global Leader in Seattle Matters to Global Health of Women

In my education at Lakeside High School, I have been taught the core curriculum of History, English, and the Sciences; however, the amount of learning that can be done in a classroom has its limits. One By One has exposed me deeply to concepts and experiences that other forms of education don’t provide, helping to grow my knowledge in global health and maternal health issues.

Through the Young Global Leaders Program, the idea that has stuck with me the most is the overall effect of healthy women on their society.  It may seem obvious that the presence of healthy women is imperative to a society but it was not until we studied the effects of fistula that it really made sense to me:  women are simply the fulcrums of society.  We had a speaker that depicted this clearly for us. In short, each woman helps develop their village, which helps their country, which contributes to the international economic climate, which leads to more prosperous conditions in the United States. This, in turn, gives each individual within the United States, like myself, benefits. While this might be a self-centric point of view on helping people, it is indeed an irrefutable motive to do so. Beyond the economic benefits of healthy women, the social ramifications of fistula are vast and impossible to overlook. Most women who have fistula are ostracized from their communities, both physically and emotionally, and denied the opportunities to truly live, productively and normally, with the dignity and sense of self-worth we so often take for granted.

While these conclusions might be oversimplified, the resources needed to fix a relatively simple problem are minuscule when compared to other projects our country chooses to pursue in the international arena. The solution to fistula would require an investment in medical facilities and access to a variety of resources that women do not currently have—and also support for fistula survivors-turned-leaders in One By One’s Let’s End Fistula program in Kenya (who are already working on this deeply systemic problem). This type of commitment by a government would not require a scientific or medical breakthrough.  During my time in One By One’s Young Global Leaders Program, I have learned that remedying a social problem like fistula is both extremely difficult on the advocacy side, while being remarkably straightforward on the logistical side. The efforts of One By One to both work deeply in the field with fistula patients and survivors, as well, as working with young people like myself to educate us about this global health issue and teach us advocacy skills are imperative to the physical and social health of women around the globe.

Anna Thompson is a Junior at Lakeside School in Seattle, Washington and one of 11 Young Global Leaders, ages 13-17, in One By One’s nine-month global health education and advocacy training program.

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Jambo, Handshakes and Hugs

One By One Regional Representatives

One By One Regional Representatives

 

By Renata Hasle, Growth Strategist, One By One

My summer started with an early winter visit to Kenya. It was an extraordinary cultural, relationship building, learning and working 14-day trip.

The moment I arrived in Kisumu, I felt this invisible welcoming embrace. My first few days were a whirlwind of “jambo” (how are you?), handshakes and hugs.

Why would a stranger receive this welcome?

One By One is the reason. The foundation for this immediate sense of belonging is One By One’s organic, flourishing working relationship with our Kenyan colleagues, the patients and their families.

Additionally, trust is deeply embedded in our relationships.

Kenyans are a diverse population, yet they have two important qualities in common; they are proud to be Kenyan and they place great value on building strong communities. Kenyan life revolves around “harambee” which means to pull together. There is a strong emphasis on inclusion, family, friends, neighbors, mutual responsibility and helping one another.

One By One Regional Representatives (RR) are deeply committed to helping their community by ending obstetric fistula and go about their work in true Kenyan spirit.

Experiencing first hand One By One RRs do their “rounds” in geographically remote areas is a once-in-a-lifetime experience. Their professional, yet caring manner puts the most vulnerable and isolated fistula patients at ease eventually persuading them to take the journey to treatment.

Within an hour  in the field it is clear that One By One has something special going on. The “Let’s End Fistula” program is here to stay and will continue to transform thousands of lives of obstetric fistula patients. One By One is an established, highly respected presence in Western Kenya and our 30 Regional Representatives are embraced as leaders and a vital link to our success.

It is a privilege to be part of such a unique organization. One By One’s programs are true to the mission and deliver promised outcomes every day. We are indebted to our donors who are instrumental in the growth of our programs.

 

John educating about fistula and Jane is screening for fistula symptoms in Kakamega County, Kenya

John is educating about fistula and Jane is screening for fistula symptoms in Kakamega County, Kenya

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Kicking Fistula Out of Africa

~ By guest blogger, Diane Bowe.  Diane is a One By One Board Member
and is accompanying One By One staff on a visit to Western Kenya.

On a scorchingly hot Sunday with zero breeze, 4 teams of twenty adolescent girls met in Mumias, Kenya to participate in the Let’s Kick Fistula Out of Africa soccer tournament. The estimated 300 participants, organizers, and spectators kicked off the festivities by marching through the main streets behind a huge banner and a spirited mascot. Because Sunday is market day, and because of the vocal strength of the mass, the moving parade attracted ample attention to the issue of fistula.

As we marched onto the pitch ready to play, the PA system blasted lively music and the rapid fire enthusiasm of the master of ceremonies. The excitement was palpable. Tournament organizers gave a warm welcome and recognition to the One By One staff, and the games eventually got underway.

Meanwhile, Habiba Mohammed, One By One’s Kenyan Field Supervisor, seized the opportunity to lead an educational outreach with a non-playing team aboard a parked Muslim Girls School bus.

Nora Amisi Otonodo, One By One’s Youth Program Coordinator, facilitated an educational group under the scarce shade of a tree with a different team.

Who won the tournament? It  didn’t really matter. Fistula outreach and prevention are happening in most creative ways and environments on behalf of One By One in Western Kenya. Indeed, together we are “kicking” fistula out of Africa.

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Joy

~ By guest blogger and photographer, Charlie Ainslie

Charlie traveled with One By One staff on a recent trip to Kenya. While there, she had the chance to join Dr. Mabeya in surgery at Gynocare to watch and photograph a fistula repair. 

So, it was my first surgery ever, and I thought I was literally going to pass out. But I got in there, and it was a lot different than I thought it was going to be. I don’t think anyone could have prepared me for what I was going to see. In 6 hours, it was more intense and less intense, scarier and more natural than I had ever expected. It was a total roller coaster of emotions. What I thought would make me queasy completely enthralled me, and what I thought would be simple to watch (sutures, and stitching up the patient), really made my stomach turn.

The one element of the surgery that I loved most was watching Dr. Mabeya do something that only takes a few hours, but completely changes the lives of these women, and he does it with such grace and dignity. He’s so humble, which I don’t understand, because he’s one of the most extraordinary people I’ve ever met.

 

Dr. Mabeya prepares Joy for surgery.

The surgery I got to watch was on a woman named Joy. Joy is 60 years old and has had fistula since 1982. She’s probably 4’10”, 90 pounds, really little. They rolled her into the operating room, and she didn’t look scared or nervous, just ready. I had no idea she would be awake the whole time, because they were going to be giving her regional anesthesia from the waist down. This made me a little anxious because I was going to be taking photos of her the whole time. As a photographer, my clients are always awake, but there was some relief thinking she would be asleep, so that if I got uncomfortable, or had to take a break, I wouldn’t make her uncomfortable. Little did I know, Joy being awake, not only helped my nerves, but brought her some comfort too, and created an experience with her that I will have for the rest of my life.

As much as I’d like to say I held it together the whole time and didn’t flinch once, there were moments, where I thought I was going to pass out. The few times…ok, the many times this happened, I thought it would be a good idea to go check on Joy, give her a few smiles and take some photos. I so badly wanted to reach out and grab her hand and let her know that I was in this with her. However, I didn’t know her comfort level, and the language barrier made it difficult. Instead I just stood by her, and without saying anything, Joy reached her hand over to my arm, placed it right next to me, gave me a smile, and stroked my arm for about ten minutes. I couldn’t tell who was helping whom more. This became my go-to position any time I felt nervous or light headed. I knew after that moment that Joy was someone extremely special, and I was so happy that she was getting treatment at Gynocare. I couldn’t think of a better place for her to be at that moment. I also knew that she would never get rid of me, because I had to check-up on her and make sure she was ok.

The next day we left to do field work for about week, and when we returned to Eldoret, I was happy to find Joy smiling and recovering at Gynocare. She remembered who I was immediately, and I sat down with her in the grass, held her hands, and one of the nurses, Zehara, interpreted how happy I was to see her in good spirits recovering. We took some photos together, which we printed and gave to her the next day, so she could have something to take home with her from our time together. She became my Kenyan grandmother, and I promised to visit her again when I return to Kenya. The next day, as we were leaving for our next destination, we also ran into her Regional Representative, Evans, who had found Joy during his outreach and had sent her to Gynocare for treatment. He was there to make sure she was doing ok. Between her incredible surgeon, amazing caring staff at Gynocare and support from her Regional Representative, I left the facility knowing she was in great hands, and that I would see her one day again, a repaired woman.

 

Joy and me at Gynocare while she was recovering.

 

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Visiting West Pokot

After 2 hours on a dirt road and 2 more driving through dry river beds, canyons and red desert, out in rural West Pokot, you feel like you are in the middle of nowhere. The people of West Pokot are nomadic pastoralists, and in a society where women and cattle enjoy approximately the same status, and female genital mutilation (FGM) is practiced freely, it’s no wonder that many women develop fistula during childbirth.

But, even out here you can buy a coke! And Habiba, One By One’s Field Supervisor, manages to get cell reception. She talks with a Regional Representative about transporting a woman to Gynocare for fistula repair. Coca-Cola has done an incredible job of canvasing the globe with its product. And the cell phone infrastructure in Kenya is amazing. The government and the private sector have poured tons of money into wirelessly connecting the country. It’s amazing that when money and priorities are aligned, people can bring product and infrastructure to even the most remote places in the world.

So why can’t we do the same with hospitals? Women in West Pokot (and less rural parts of Kenya) still die in childbirth. The closest hospital is at least a day’s walk away for most, and even if women make it to a health facility, it is often so under staffed and equipped, it can’t do much to help women in need. But, if we shifted our money and our priorities, we could bring the people of West Pokot something they really need – better, well-equipped hospitals, healthy moms and babies, and an end to fistula.

A West Pokot woman with her baby 

 

A West Pokot man with his cell phone 

 

The “road” we drove on in West Pokot

 


Here’s a short video clip of our drive 

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ONE BY ONE FIELD TRIP TO MIGORI

– By Nora Otondo, fistula survivor and One By One Regional Representative

Henry Jaoko (above) and Teresa Adamba are the Regional Representatives for the area of Migori. Teresa is married, while Henry just married Scholastica Aluoch due to the nature of his job, which is dealing with women.

Migori is such a wide area but Henry and Teresa have done an incredible job educating the community about fistula and finding patients with fistula. They have had many patients because they encourage each fistula survivor to bring in a new patient to go for treatment.

While One By One visited Migori, we met a young boy Abdul, who was 11 years old, and his mother, Shamimu. He is suffering from uncontrolled stool leakage and wishes he were a woman so we could him get treatment.

The trip extended to the Sibuoche area, which is about 30 kilometers from Migori on a rough, muddy and rocky road. In fact, we got a flat tire in the process.


Motorbike is the only means of transportation to Sibouche, and costs 300 ksh (about $3). Along the way, there are only 3 medical centers, which are Migori District Hospital, a dispensary after over 10 kilometers, and finally Sibuoche dispensary. This means that most people walk over 10 kilometers to get to a medical facility that does not have doctors and/or medical equipment. This puts pregnant women at a high risk of fistula.

The meeting was held at Sibuoche center and after teachings about fistula, we screening for fistula was done and we found 4 patients. Mongare and Habiba also spoke at a separate meeting of fistula survivors. They discovered that some of the women are not yet fully healed and advised them to do exercises and report back in January if no change occurs. Generally most of the survivors are doing well.

The survivors have formed a group, which comprises of 50 members (including 35 survivors, 10 men and 5 additional women). The group needs an office, room to sit, loans to start income generating projects, and a motorbike for transport. Mongare advised them to register as a Community Based Organization (CBO) with the Kenyan government, which will help them access loans.

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Western Kenya Model Project

It has been an incredible fall for One By One. Thanks to our generous partners, donors and an incredible team in Kenya, we have launched our most comprehensive and far-reaching program yet.

After five years of working on fistula, through prevention and treatment investments, in different contexts, we felt we had learned a great deal and were ready to make some bold steps to increase our impact. In 2010, One By One made a strategic decision to select two regions in which to make multi-year investments in the development of both comprehensive fistula treatment services and critical prevention activities.

Our first region chosen is Western Kenya – a five county region that includes the Rift Valley and borders Uganda. Our program is called Let’s End Fistula.

Through this partnership effort, we hope to demonstrate a powerful model of how the burden of obstetric fistula can be substantially reduced (and eventually eliminated) with shared vision, commitment and collaboration among local and international organizations, as well as substantial local community involvement.

We launched Let’s End Fistula in several ways this fall. We have supported the start-up of a new fistula treatment center in Eldoret, Kenya called Gynocare. Our partner, Dr. Hillary Mabeya (pictured below) is a well-respected and experienced surgeon who is now performing surgeries at Gynocare with funding from One By One.

Additionally, we hired Ms. Sarah Omega, a fistula survivor and outreach specialist to be our Outreach Manager. On September 23-25, Sarah and a team conducted One By One’s very first Regional Representative Training. This training was made available to 30 people that live throughout the five county region of Western Kenya – 21 of whom are fistula survivors, five are concerned women and four are men who are committed to seeing the end of fistula.

The training lasted three days and was based on a well-planned curriculum that gave each Regional Representative information about fistula treatment, prevention, public speaking skills, data collection training and leadership skills. We also gave each Regional Representative a cell phone, minutes, a One By One t-shirt, a One By One badge and a One By One button. They also were given a binder of information and data collection sheets.

These men and women are incredibly inspiring group that have formed strong bonds together as localized leaders working across boundaries to share best practices as they conduct outreach in their areas. You can see pictures and some of their thoughts about their work with One By One on our facebook page.

This past October I had the privilege of working in Western Kenya alongside our outreach team of Sarah Omega, Habiba Corodhia Mohamed, a social worker working with us who is based in Mumias, and ten of our newly trained Regional Representatives. It was awe-inspiring to watch this group conduct outreach and connect with village chiefs to ensure proper involvement from local communities.

I am amazed and thrilled to report that in the first six weeks of work of our 30 Regional Representatives, this group has conducted 176 rural and local activities, found over 100 women with fistula, and educated over 23,000 people. The Representatives are already far exceeding our expectations!

I will continue to blog about this amazing project so please stay tuned.

In addition, you will be able to read blog postings directly from the field courtesy of Ms. Norah Otondo, here. Norah is a recently repaired fistula survivor who has joined our outreach team as both a Regional Representative and as the “voice” of the Let’s End Fistula project. Norah will be taking photos, posting blog entries about the work of our team in Western Kenya.

I hope you enjoy Norah’s first blog entry and stay tuned for more from Norah and the Let’s End Fistula team!!!

– Heidi Breeze-Harris

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One By One Field Visit in Kenya

– By Nora Otondo, fistula survivor and One By One Regional Representative (pictured below)
One By One Let’s End Fistula project held a field visit between 15-17 October 2011 to rural areas of Western Kenya including: Bukhalarire, Port Victoria, Khwisero, Kakamega Women’s Prison and finally to Cheptais, Mt. Elgon.

The field visit team consisted of our leaders, Heidi One By One’s co-founder and executive director based in the US, Sarah Omega our Kenyan Outreach Manager, Habiba Mohamed a community social worker, and me, Norah Amisi Otondo alongside ten of our newly trained Regional Representatives. The Regional Representatives took us on field visits and we discovered that fistula is a rampant condition among women in the Western Kenya region. However, the sufferers and the affected are living in ignorance of what fistula is. This has led to family breakup, abandonment etc.


One By One has extended its loving hand, through the Regional Representatives, to reach out to these destitute women to find them, sponsor for their treatment and also to create awareness by teaching the community about fistula, specifically its treatment and prevention. This is what happened in the field trip and continues to this day.

BUKHALALIRE
Meet these women (above) who welcomed One By One with song and dance, most of them fistula survivors. And their song: “Thank you one by one for giving us back our lives, we were in darkness, worthless, abandoned, and hopeless being looked down upon but now we have life, are fine, dignified and smiling again. Thank you.”

Here also meet area Chief Patrick Obuya (pictured above), who is enthusiastic and interested in women’s affairs working to mobilize the community as an administrator. He states that women have suffered so much not knowing there is a remedy for fistula .He thanked Heidi for One By One’s efforts to sponsor women with fistula treatment and encouraged her to keep on. He told us that he would help identify the women for treatment at Gynocare Centre.
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Learning about Fistula

Before last year, I knew of fistula only as a Latin word meaning “pipe”. Now, I have learned exactly what obstetric fistula is, and with this knowledge has come a powerful drive to help women in the developing world who are victims of this condition. Last year, through a partnership with One By One and my school, Lakeside, I had some opportunities to do just that.

My first introduction to obstetric fistula was during a class meeting with Heidi Breeze-Harris, One By One’s executive director, where we were shown a video about women suffering from fistula, and told that helping One by One would be our class project for the year. This opportunity to help women in Africa struck a chord with me, because I had traveled to Tanzania over the previous summer. I had the opportunity to help out at a school, meeting many girls around the age of 15. It was amazing for me to see how these girls, who were my age at the time, were a good foot shorter than me, due to a diet without much protein. From the video, I learned that one major cause of fistula is obstructed labor, resulting from child marriage and pregnancy while a girl is still too young. It was nearly impossible for me to imagine that any of the girls who I had laughed and played soccer with could soon become pregnant, especially given their small stature.
I learned more about fistula in history class, when we began to do readings from Nicholas Kristof’s Half the Sky. The excerpts included stories both of girls who were suffering from fistula, and of those who had been cured. These were the first readings for school where I would find myself, thirty minutes after finishing the reading, still staring at it, lost in thought. One of these stories made me want to throw a few pieces of clothing in a bag, hop on a plane to Africa, and go help in a hospital there.
The first opportunity that I had for actual service was selling cookies at a UW tailgate. To sell the cookies, I had to be willing to approach complete strangers, and talk openly with them about obstetric fistula. At first, I felt awkward, which made it tricky to get the point across. As time went on, though, my confidence grew as I thought of the people that I would be helping, and how the money that we raised could change a life.
The second project that I worked on was a benefit concert at Lakeside. My English class organized, promoted, and produced the entire concert, learning more about fistula in the process. I learned how to write a persuasive letter, and how to appeal to a wider audience. At the concert, I decided to emcee, something that was very much outside of my comfort zone. Nevertheless, I came out of the concert much more confident in my speaking abilities, and I was glad that I had stepped up.
By learning about fistula both in the classroom and by venturing out to raise funds myself, I feel like I have gained a greater knowledge about the condition, and the approaches that must be used to cure it. I also had the opportunity to meet Sarah Omega, a fistula survivor and One By One’s Outreach Manager in Western Kenya, and listen to her speak. I found it extremely inspiring that Sarah, who has gone through so much, is still willing to dedicate her life to helping similar victims.

Finding out about this condition has introduced me to a whole future of possibilities that I had never considered before, such as a career in global health. It has also been extremely interesting for me to connect the topic of fistula to the greater subject of women’s rights, and the importance of equal opportunity for education.

Right now, I feel like my education concerning fistula is far from complete; in fact, it’s really just beginning. I hope to make connections with victims and to develop a greater understanding of how to solve the issue. Fistula has been completely eradicated in the United States, and there is no reason that someday, it can’t be eradicated in Africa.

After learning about this condition both in and outside the classroom, I understand that it’s going to take the work and ideas of many to eradicate fistula. The first step is education – people need to understand what fistula is. The task of spreading knowledge now lies in the hands of those who already have it, and we must be willing to speak up, loudly, about the issue. We must also ensure that fistula survivors have a voice. Every one of them has a story that needs to be shared, and these stories will help people around the world to understand the condition, and, more importantly, they will let other victims know that they are not alone.

 

- By guest blogger, Grace Stonecipher

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