The Fourth Endangered My Life

By Shafic Mutegule

Mutesi Joyce (42) lives in Kavule Village in Namutumba District. A mother of six, 3 boys and 3 girls, she has been living with fistula for two years. Her fistula occurred from miscarriage complications right as the COVID-19 pandemic was just beginning. At the time, transportation and health facility access were severely limited.  

“I first got a miscarriage in 2017, and two miscarriages in 2018. These three miscarriages were fully managed by doctors through proper evacuation -- [the fourth] endangered my life.”

In early 2019, Joyce and her husband decided to try for another child, but unfortunately she experienced another miscarriage. This time she required immediate medical attention.

Shafic and Joyce at Namungalwe Health Centre 3 

“I was rushed to a nearby clinic in Namutumba Town [and] later on referred to Namutumba Health Facility. An evacuation was done by the doctor, and little did I know that my uterus was damaged during the evacuation process. I started feeling sick and [having] a lot of abdominal pains.”

After her dilation and evacuation (D&E), Joyce decided to return to the health facility for care and she was advised by the health worker that her uterus needed to be removed. While the operation was successful to fix her urgent health crisis, once home, she noticed that she was leaking urine.

 

This year, Joyce attended an event in Kavule organized by Uganda Village Project’s Fistula Ambassadors. Hearing her story, the ambassadors came to check on her at home. Upon seeing her condition they immediately referred her to Loy, UVP’s Reproductive Health Program Coordinator.

“I talked to Loy on [the] phone, [she] provided counseling and explained to me all the services that are provided by Uganda Village Project through the fistula program. This gave me some hope that I could get back to normal as I used to be.”

I first learned about Joyce during our regular Monday staff meeting when Loy shared her story. Inspired by her strength and resilience, I arranged a time to meet with Joyce before her surgery at Kamuli Mission Hospital.

We met at Namungalwe Health Centre 3 during the patient confirmation pre-screening. Despite her condition, she was so happy -- smiling and excited to be selected and confirmed among the fistula patients that were to receive treatment during the October surgery camp. I am grateful for the opportunity to have met her and learn about her life.

After pre-screening, UVP escorted Joyce and her caretaker to Kamuli Mission Hospital where she underwent her repair surgery. She is currently recovering safely, grateful that her suffering is finally over.

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Learn more about UVP on our website and please consider supporting UVP with a monthly gift. We provide year-round programming and education for HIV/AIDS, clean water and sanitation, malaria prevention and treatment, reproductive health services, and fistula repair surgeries. 

A Powerful Influence

 By Tumusiime Loy, Program Coordinator 

 Hajara’s story is being shared with her consent.  

For years, Hajara has been a powerful influence in her community as a Fistula Ambassador. Two days each week, Hajara gives a health talk about obstetric fistula at the main hospital and two other health centers in Mayuge district. She actively seeks out women in her community who may be suffering from untreated fistula and encourages them to contact UVP for support.

In 2012, Hajara suffered from an obstetric fistula following the complicated and painful birth of her baby boy (her 5th child, after two sets of twins). After delivering by C-section, Hajara began to leak urine uncontrollably. She knew that her pain and other symptoms would not go away without surgery, but she remained skeptical that she would recover and be able to return to her daily activities. With the support of her husband, Hajara sought help from UVP. She attended a repair camp in Kamuli and had a successful repair and recovery in 2013. 

Following this humbling experience, Hajara felt as if she regained her dignity, empowered to help other women learn about the causes, prevention, and treatment of fistula. Hajara’s work as a Fistula Ambassador is guided by her passion and resilient commitment to her community and women in need. Any time a baby is born, you’re likely to find Hajara close by, checking in on the new mother.
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A special thanks to The Fistula Foundation for their support of UVP since 2013.
Learn about all the ways UVP fights fistula on our website.

If you’d like to help women like Hajara, please consider supporting UVP with a monthly gift. In addition to supporting fistula repair surgeries, UVP provides programs and education for HIV/STIs, clean water and sanitation, malaria prevention and treatment, and reproductive health services.

I Never Lost Hope

By Tumusiime Loy, Program Coordinator

Stella’s story is being shared with her consent. 

At Kamuli Mission Hospital, other patients crowd around Stella. Just 22 years old, she’s a survivor of sexual assault and rape, and a recovering obstetric fistula repair surgery patient. 

At the age of 16, while home alone, Stella was raped by multiple intruders. This traumatic event left her unable to control her bladder for months. At 19, Stella became pregnant and after a complicated birth that lasted for days, sadly, Stella’s baby passed away. To make matters worse, Stella developed an obstetric fistula. Her husband was not supportive and left her for another woman after realizing the complexity of Stella’s health concerns. An initial attempt at repair surgery failed, but Stella persisted.

She eventually received a phone call from a friend that would lead her to the UVP-supported Kamuli Mission Hospital. It was here that Stella received her second and successful repair surgery, and now she sits surrounded by friends and fellow survivors. 

“Sometimes when life becomes especially difficult, we wonder if everyone in the world has forgotten us . . . I never lost hope because I had always dreamed of living a positive life”.  

Stella is a beloved member of the UVP family and we look forward to her becoming a Fistula Ambassador when she is ready.
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A special thanks to The Fistula Foundation for their support of UVP since 2013.
Learn about all the ways UVP fights fistula on our website.

If you’d like to help women like Stella, please consider supporting UVP with a monthly gift. In addition to supporting fistula repair surgeries, UVP provides programs and education for HIV/STIs, clean water and sanitation, malaria prevention and treatment, and reproductive health services.

Serendipitous Encounter Leads to Life-Changing Procedure

by Tumusiime Loy, Program Coordinator

As we sit in the bright sunshine on the veranda outside the fistula ward at Kamuli Mission Hospital, Kevin’s excitement was palpable. She was proud to be selected to be interviewed, which made her more confident to share her story. With her husband, Daniel, nearby, Kevin tells me how she came to seek treatment for fistula.

Kevin was just 17 when she first became pregnant and, in the tradition of her family, she delivered the child with a Traditional Birth Attendant (TBA). After delivering, Kevin was in a great deal of pain and the herb bath the TBA prescribed was not providing any relief. After several months, the pain subsided, but she was still leaking urine. When Kevin and Daniel sought advice from TBA, they were told that is just a consequence of childbirth. Knowing in their hearts that there was a better answer, Daniel and Kevin decided to deliver at the health center for their second child. While Kevin and the new baby were recovering, there happened to be a UVP Fistula Ambassador, Jackie, sensitizing a group at the health center. After the presentation, Kevin approached Jackie and the two discussed Kevin’s symptoms, and Jackie suggested they keep in touch.

Months later, Jackie went to visit Kevin and talked about the upcoming fistula treatment camp. With the TBA’s advice that this was simply a result of childbirth ringing in her ears, Kevin was reluctant to attend the camp. It wasn’t until Daniel said he would escort her and act as her attendant that she committed to seeking treatment.

Now, after a successful surgery, Kevin is so grateful for that fateful day at the health center. If it weren’t for the Fistula Ambassador, Kevin may have never learned about fistula and could still be suffering. She and Daniel are both appreciative for the services provided to them and vowed to continue sharing their story with others who needed education about preventing fistula.

Special thanks to The Fistula Foundation for supporting UVP's fistula program! If you would like to learn more about all the ways that UVP fights fistula, please visit our website.

Uganda's First Ever National Fistula Conference

by Kelly Child, Managing Director

The room was full of surgeons, midwives, nurses, social workers, nurses, former patients, and executive directors discussing fistula. And it was electrifying.

It was the first ever National Conference on Obstetric Fistula in Uganda, planned and executed by a small planning committee at the end of August. Approximately 300 people participated including members of parliament with the Speaker of Parliament Hon. Rebecca Kadaga, the guest of honor, and several District Health Officers.

Obstetric fistula, a condition typically acquired by prolonged labor, results in incontinence – an uncontrollable leaking of urine and, in some cases, feces. In Uganda, there are estimated more than 150,000 untreated cases with 1,900 new cases each year. From the efforts of UVP and the other fistula fighting organizations present at the conference, we treat approximately 2,500 cases each year. At this rate, we will eliminate fistula in 400 years. Clearly, we have a lot of work to do.

The United Nations Fund for Population Activities (UNFPA) started the Campaign to End Fistula, which focuses on three key areas: prevention, treatment, and reintegration. In recent years, our community of fistula fighters has shifted focus from solely looking at treatment to integrating prevention and reintegration as key components of fistula services. UVP’s average patient lives with the condition for 10.9 years prior to receiving treatment. Nearly eleven years of being stigmatized, neglected, and ostracized. Even though the physical treatment takes less than a month, the psychological and socio-economic healing process can take much longer.

Erin Anastasi, UNFPA Global Coordinator, congratulated Uganda in several areas:

• Uganda is part of a small group of countries with a formal strategy surrounding fistula
• Of 50+ countries participating in the End Fistula Campaign, Uganda is one of only 2 countries to answer the call to conduct a national conference
• Uganda’s fistula repairs annually is one of highest in the world

Anastasi also mentioned inadequate human resources and expertise, lack of focus on social reintegration, and a backlog of cases as challenges moving forward.

During presentations, representatives from other organizations such as Engender Health, Medical Teams International, and TERREWODE covered topics from nurse care and utilizing VHTs (village health workers) to the proper execution of surgical procedures and improving surgeon mentoring programs. One of the most interesting presentations delivered findings surrounding the effects of fistula on the spouse. According to the study, approximately 65% of men strive to support their spouse and maintain the relationship and are also affected by the social stigmatization of fistula. By focusing on social reintegration of former fistula patients, programming can support the entire family unit.

UVP currently addresses patient identification and social reintegration in a very personal way with multiple in-person visits. Additionally, the programming is evolving to more wholly address social reintegration by implementing a longer approach to social reintegration after treatment in order to incorporate income generating activities and other educational opportunities. Approximately 25% of fistula patients have a primary level of education and most patients indicate a desire to either continue formal education or skills learning. Thank you to the Fistula Foundation and our donors for their generous support of our programming and their role in eliminating fistula in Uganda!


A donation of $260 covers UVP's costs of bringing a woman to the hospital for fistula repair surgery, her room and board, outreach to and follow up with women receiving treatment, and community education initiatives.

Intern Dispatch: Mwendanfuko

by Solome, Brenda, Sheridan, Carmen, Sami, Megan

Mwendanfuko Village Health Team

The day was reaching 2:00 p.m. as our team finished lunch with UVP’s managing director and began prepping for our Village Health Team (VHT) meeting. As we anticipated the arrival of the VHTs we reviewed the different topics we wanted to cover with them—it was going to be an information packed meeting. To little surprise, at 2:30pm Mr. Bumali was the first to arrive. Our team sat outside with Mr. Bumali and decided that as we waited for the other VHTs to arrive, an easy way to pass time was to play a card game.  We decided on UNO and began teaching Mr. Bumali how to play. First Megan explained the rules of the game to Brenda and Solome so that they could then translate the instructions to Mr. Bumali into Lusoga.  With everything translated and with all of the cards dealt, we were ready to play. The game began slowly as people acclimated to the rules and processes. Soon the competition picked up, and as more VHTs began arriving, the game became very fun and exciting for everyone. Each VHT that arrived was equally entranced with the game and eager to join in. After seeing our VHTs laugh and joke over a simple game of UNO, we quickly realized that we had developed a new fondness for laughter and down time with our VHTs beyond working hours.

The next morning, we held a reproductive health day at the primary school.  Our teaching was aimed at the upper levels at the school and therefore focused on the importance of staying in school and abstinence, while also raising awareness about obstetric fistula. As we planned for the day we were anxious about how the students would engage with the topic?  Would they be rowdy? Awkward? Embarrassed? Throughout the day we were happily surprised, the students listened intently and, although shy at some points, were engaged and involved in discussion.

This sensitization helped us to realize the ways in which children are sources of change in their community.  They are very eager to learn, ask questions, and share the information they learn with family and friends.  It is so important to educate children within the community as they are one of the strongest channels to the education of the entire population. We also learned more about the importance of cultural context, as the sex education that we provided at the primary school in Mwendanfuko is very different from that which the international interns would provide or receive in the United States, or many other countries.  In designing this sensitization, our team discussed the importance of recognizing the cultural expectations of a society and taking different perspectives into account when determining how to educate about and address specific issues.

Later that day, we headed back to the school to hold a malaria sensitization for the community. While walking towards the school field, we felt the first drops of rain and quickly sought shelter under a mango tree as buckets of water began to fall from the sky. “Maybe it will go away soon?” we wondered as we saw lightning flash across the field. With the acceptance that the sensitization we had planned and mobilized for all week would not be held that day, we gathered in a classroom to wait out the storm.

Having made friends with a 12-year-old girl named Shanitah, Carmen decided now was a good a time as any to embarrass her in front of all of her friends. Carmen grabbed Shanitah from under the classroom’s protective overhang and pulled her out into the pouring rain.  Using the limited Lusoga she had learned, she challenged her mukwano gwange to a race across the school field. To the amusement of the hundred or so children gathered, Carmen and Shanitah took off at breakneck speed in an Olympic-worthy example of athleticism, which ended with Carmen slipping in a puddle.  Needless to say, the afternoon, while different than originally planned, was a huge success.

After having decided to postpone the malaria sensitization due to the rain, we trekked back to our muzungu house in the rain – shoes in hand and toes covered in mud.  Feet were cleaned, shoes were washed and the few warm clothes we had packed were dug out from our suitcases as we settled in to our cozy house, listening to the rain pattering on the tin roof. As night drew closer and the lanterns were lit, Sheridan decided that it was an ideal time to execute something she had been talking about for weeks – a hair cut. Walking out to the front veranda with our one pair of small safety scissors, she announced that the time had come for Solome to cut her hair. Solome had no experience cutting any hair, let alone muzungu hair, but declared she had a gut feeling that she knew how to do it. So there it began, the Mwedan-salon was in full swing, and as the community members huddled around to see the muzungu cut her strange hair, Solome’s true hairdresser potential was realized.

During the hair cutting process, we hosted three girls at the muzungu house who happen to be daughters to our next door neighbor. They were so amazed to watch muzungu hair being cut and were wondering why Sheridan had decided to cut her hair short. During their stay at our house we taught them how to play UNO; they caught on quickly, pointing out that UNO was similar to the Ugandan card game called MATATU. We started playing UNO at around 7:30pm and didn’t finish playing until two hours later.  The games were long, exciting, and interesting and after the final round every was feeling happy but tired.  Our guests left the muzungu house very happy and looking forward to playing more UNO.

Our sixth week was full of both challenges and successes in the village. We continued to learn more about the restrictions of our abilities in our work, as well as the strengths of our team and our community. As the summer speeds by, we hope to get as much done as possible and continue to empower our community and VHTs to carry on our work after we leave.

Stories from the Field: Fistula Patient's Success

By Maureen Nakalinzi 


As we approach her house, we find her waiting for us at the door. She informs us she was going to her stall in the trading center when Loy called, informing her of this follow-up visit. N. Maliza attended the fistula camp last year in December and luckily for her, the repair was successful. When she left the camp, she got a small loan from her friends at the trading center and restarted her vegetable selling business that she was forced to close down when she got the fistula. She says, “Every day when I wake up the morning to a dry bed, and when I pack my vegetables to go to the market, I thank God and Uganda Village Project for giving me a new lease of life and for reaching out to me when I had lost all hope."

UVP's Obstetric Fistula Program

By Rashad Turan Korah Thomas

Virtually unheard of in wealthier nations, obstetric fistula (Latin for hole) is an affliction of the very poor, and is predominantly caused by neglected, obstructed labour. The prolonged impaction of the baby’s head against the mother’s internal tissue results in a severe medical condition in which an opening develops between either the rectum and vagina or between the bladder and vagina causing persistent incontinence and rank odour. Though a simple surgical repair can mend most cases of obstetric fistula, most women go untreated, unaware of what it is, afraid to admit to the condition if they do, or too poor to afford the repair. Because of the impoverished, rural demographic most affected by fistula it has historically been difficult to collect accurate statistics.

In addition to the physical damage done to a woman’s body there are other ramifications of the condition. Misinformation leads to stigma that often leads to women being ostracized from their homes or communities. Relegated to the periphery of community living, these women are, effectively, removed from engaging in society and at the same time are limited in their ability to care for themselves.

Up to June UVP, in partnership with UK-based Uganda Childbirth Injuries Fund (UCIF), helped facilitate surgical repairs for 12 women from 4 different districts at the two repair camps this year. The partnership allows UVP and UCIF to remain faithful to their strengths for the greatest impact. UVP identifies women with obstetric fistula though village outreaches, health centre referrals, radio shows, and simple word-of-mouth between women. UVP then transports women to “repair camps” at Kamuli Mission Hospital, where they are repaired by surgeons from UCIF. UVP also transports one attendant for each patient and after surgery; UVP transports the women home (an important step, because if they go home by motorcycle taxi, or walk long distances, they risk re-opening their healing fistula).

Our fistula program staff then follow-up at the women’s homes to check on the repair’s success, to monitor for surgical complications, and to assist the women with further steps in the cases where the repair was not successful.

To donate to UVP and the obstetric fistula program, check out our donations page here.

Rashad Turan Korah Thomas currently serves as UVP's Country Director and is located in Iganga town. This article was taken from UVP's Semi-Annual Report for 2012. 

Alumni Profile: Jessica Suchy, UVP Intern 2011, and Interview of Alison Hayward, UVP Founder 2003 and Director

Over the next few weeks, we will be telling a series stories of alumni and current volunteers, staff, and board members who have worked with UVP. Jessica Suchy is our first individual to showcase.

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Jessica Suchy is originally from Maryland and graduated from the University of Maryland, College Park with a degree in Communication and citation in International Studies. After graduation, she worked in hospital revenue cycle consulting for several years. For the past two years, she’s been working towards her Masters in Public Health at the University of Pittsburgh and interned with UVP in 2011 as a practicum for her degree. She plans to return to Washington DC to work in program management and evaluation. Recently, as part of her coursework, she interviewed Alison Hayward, UVP's Director and one of its co-founders, about the obstetric fistula program.

Jessica: Please describe the work you currently do (and have done in the past) with the Uganda Village Project.

Alison: I first helped to found the Uganda Village Project in 2003, just after graduating from college. I traveled to eastern Uganda to perform a needs assessment with two other students. Having seen the desperate needs of the communities there, I began spending more and more time trying to build the organization to serve those communities. I took over as director in 2005. I have served in the assistant director or director role since then.

UVP's core program concept is called Healthy Villages. In this program, we include a variety of interventions aimed to address the needs of each rural community we work with. We are specifically targeting a group of villages identified with the assistance of the District Health Office as being the most deficient in sanitation measures, which is a proxy for poverty level. Interventions included in the Healthy Villages Program include mosquito net distribution and malaria prevention education, sanitation campaigns, HIV testing and counseling, family planning, construction of protected water sources, and formation of a team of community health workers called Village Health Teams. The formation of these teams is endorsed by the Ugandan government, and they serve as the main point of contact for a community and source of sustainability for the programs after the communities graduate from the 3 year program.

In addition, UVP also supports a scholarship program for secondary school and university students, and helps to facilitate referral networks for common diseases of poverty for which curative treatments are locally available, specifically, obstetric fistula and eye health (cataract surgery etc.).

Jessica: How would you describe the rural Ugandan population with whom you work?

Alison: They are amongst the happiest people I have ever met. Their continual joy for life is part of what makes visiting the area and learning from them about their culture and traditions so rewarding. They also can be challenging to work with, because of the huge cultural divide between my experience and theirs. I sometimes find it difficult to understand the motivations behind their behaviors and practices. I would also describe them as remarkably resilient. They think nothing of doing back-breaking labor for extended periods of time to achieve their goals, which is something that is uncommon in the United States.

Jessica: How would you describe the fistula patients? (i.e. demographic characteristics, their values, what's important to them, cultural factors, etc.).

Alison: The fistula patients are a heterogeneous group, so I think it is difficult to make sweeping generalizations about them. We have helped to facilitate fistula repair for women ranging from a 7 year old girl to women whose ages are unknown and listed as "elderly.” However, what they tend to share is that they are from poorer households and more rural communities. The less access they have to advanced healthcare facilities, the more likely they are to develop obstetric fistula, because they did not receive the prenatal care that identified them as high risk, or they had a prolonged and obstructed labor and were not able to access a location with the capability to perform a C-section until it was too late. Part of the accessibility issue is location and part of it is money. In Uganda, men tend to control the household finances, and they may not give their wives enough money to receive prenatal care or to give birth in a healthcare facility because they do not understand the value of it.

Fistula patients are under great pressure not to take time off from their household chores, farming, and family obligations. This is so much the case that they are willing to risk the success of their repair to go back home and start working again. We have to pay them to stay at the camp so that they can justify their absence. We also do a sensitization with the family and husband in particular to emphasize what needs to be done to try to keep the repair successful, such as no sexual intercourse for an extended time after the surgery, as the women are not in a position to say "no" to intercourse to their husbands.

I believe that despite our best attempts at social support, it is impossible for us to truly comprehend the suffering and emotional debility faced by fistula patients. This point was driven home about two years ago when a woman whose surgical repair had failed killed herself before we could get her back to the camp for another surgery.

Jessica: What challenges do you see in working with the Healthy Villages (as a whole), and fistula patients (in particular)?

Alison: Poverty is the root cause of most of the challenges, in part because poverty forces community members to prioritize their work over healthy practices and behaviors, and to try to 'save money' by not spending on necessary preventative healthcare or treatment for diseases, although in the end of course this can result in having to pay the ultimate cost.

With fistula patients, we are working with the most marginalized population of an already marginalized population. They have no power in society and their human rights have been steamrollered. We have to give them the best social support we can offer to try to get them through to a new life without fistula.

Jessica: How do you think these challenges can be addressed in the design of intervention programs targeted to this population?

Alison: The most important aspects of program design would be, in my opinion:

• Maximize support of the patients during the process because of their vulnerability and lack of money or power, this includes as best it can be arranged, extended follow up after the repair to try to ensure that complications are dealt with appropriately, that post-surgical precautions are observed and understood, and that success rates of repair can be monitored.
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• Build capacity for continued programming locally, in terms of hospital resources and local physicians/medical officers/midwives and nurses.
  
  
• Couple the repair intervention with community education so that community members understand the actual cause of obstetric fistula and that it can be cured, to eradicate myths and misconceptions.

Some people also put forth the idea that fistula repair programs should be coupled with income generation programs to provide financial and material support for the women after the repair. UVP has not extended into this area, although it's a great idea, but there are so many women (not just fistula patients) who need such a program and income generating programs venture away from our health-focused mission.

Jessica: Is there anything else you'd like to tell me about your work with UVP or the future of the fistula program?

Alison: I worry that the fistula program is in danger because the physicians who do the surgeries may leave. The British surgeons may retire, and the Ugandan physician has considered leaving Kamuli Hospital. Fistula care does not pay well and it is highly complex. Not enough local physicians are being trained or have any incentive to be trained in the surgery.

I also worry that patient rights need to be respected during the surgery process. Because of the power differential it is easy to forget that the patients still require privacy, respect, fully informed consent, etc. Because of this issue, for the past several camps we have been providing a Ugandan medical student as an interpreter for the patients, who also gets to observe and assist on the surgeries. I also was able to facilitate an American OB/GYN resident to rotate at Kamuli this year, and hoping to continue to facilitate visiting OB/GYN residents because I think they will help bring a good perspective on improving the experience for patients as well, and it's a fantastic experience for them.

And a question for Jessica -

UVP: What are you doing now, and how has UVP impacted your future career trajectory?

Jessica: Right now I'm completing my last semester at the University of Pittsburgh's Graduate School of Public Health to earn my MPH and am starting to look for jobs. I was really inspired by the time I spent in Uganda, both with the people I met in Bulamagi village, as well as my fellow interns. As a result of completing my practicum with UVP, I have focused my thesis on the empowerment of women in developing countries and am currently looking for jobs that involve backstopping and managing public health programs (specifically family planning and reproductive health) in Africa.

Overcoming Fistula and Isolation

By Dr. Brian Hancock
Specialist Fistula surgeon; Chairman and Founder Uganda Childbirth Injury Fund

Obstetric fistula is as old as the human race and it damages the bodies and lives of far too many women around the world. But fistula is treatable and preventable; alleviating the suffering and marginalization that comes with it is possible.

Better access to good obstetric care is fundamental in preventing this dreadful injury. Death or injury in labor is still all too common in countries where there is inadequate access to skilled obstetric care. In Uganda, 60% of women attempt to deliver at home. There, and in other resource-poor African countries, it is estimated that a woman has a 5% lifetime chance of dying in childbirth. Obstruction is a leading cause of death and disability. It requires an emergency Caesarean section and many women live far from the help they need or arrive too late for it.

Fistula patients are the survivors. They have usually labored for days and eventually delivered a still birth or may have been relieved too late by Caesarean. The prolonged pressure of the baby’s head in the pelvis wears a hole (fistula is Latin for “hole” or “hollow”) between the bladder and vagina. This vesico-vaginal fistula leads to life-long total incontinence of urine. In some cases, the rectum is damaged as well, leading to double incontinence.

The woman is left in a miserable state. Her chance of having more children is ruined - in 50% of obstetric fistula cases the injury occurs with the first delivery. Surgery is badly needed but it is rarely simple. The extent of damage varies enormously; in some, the hole is small and quite easy to close. But a few will have lost almost all their bladder tissue and sadly, are therefore incurable. The majority have intermediate damage that requires considerable surgical skill to repair.

Some women give up all hope of being cured; having been told that surgery was impossible in their government hospital and wary of the expense at a private hospital. Their marriages disintegrate. They end up in hiding, ashamed to go out. They become social outcasts, shunned and ridiculed because of the smell of leaking urine or faeces; they live a sad and isolated existence.

Dr. Hancock assists Dr. Matovu at Kamuli. (Photo courtesy of Dr. Brian Hancock)

I first encountered fistula in 1969 while working as a surgeon in Kamuli Mission Hospital. I was subsequently lucky enough to train at the world famous Addis Ababa fistula hospital. And since retiring from consultant practice in the UK in 2000, I spend three months a year devoted to fistula repairs in several African countries including Uganda where I am a regular visitor to my old hospital in Kamuli. Two or three times a year, I offer a fistula repair service and have been recently joined by Dr. Glyn Constantine, who will one day take over the work from me.

Obstetric fistula is as harmful to a woman’s health and well-being today as it was more than forty years ago. However, with appropriate skill about 80% of patients can be made completely continent again. Furthermore, many will have children again although they are strongly advised to have an elective Caesarean section. We can make great strides in healing these women but first we must find them.

For the last three years, Uganda Village Project has assisted us in finding women suffering from fistula by taking the initiative in searching for patients on a village-by-village basis and bringing them to Kamuli. We can operate in 20-25 cases per visits and have operated on over 500 in the last ten years. The treatment is free. This surgery encompasses the speciality of urology, gynaecology and colo-proctology and can only be learned by a long period of work in Africa with regular apprenticeship to another fistula surgeon. At Kamuli, we have a good theatre and usually two resident Ugandan doctors attending. We trained resident surgeon, Dr. Matovu, adding to his ceaseless workload where routine care and emergencies occupy most of his time. The fistula operations are done under spinal anaesthetic and require good post operative care for at least two weeks.

UVP drives our patients back to their homes diminishing the risk that they will re-open their fistula by walking long distances. Moreover, I am delighted that the UVP team follows-up with individual patients later and provides us with feedback on their progress, returning any who are not cured as some can be helped by a second operation.

Loy conducts a fistula education session for UVP. (Photo courtesy of Dr. Brian Hancock)

As with all care, it is critical to recognize complications early. The first step in prevention is to encourage ante natal care and deliveries in a healthcare facility. UVP is doing some wonderful work in education about the cause and prevention of fistula through, for example, teaching with flip charts in the villages. And UVP has trained a former patient named Loy to do this as well. She is in an ideal position to explain the problem to her community. She proves that not only is successful maternal healthcare possible but she also shows that re-integration can be realized and that the isolation from fistula can be overcome. Our efforts to cure and prevent this tragic injury will continue for the sake of all women in need of those goals.

Assessing new patients. (Photo courtesy of Dr. Brian Hancock)

Dr. Hancock is the author of the book “Practical Obstetric Fistula Surgery,” available at brian@yealand.demon.co.uk or http://www.talcuk.org/

Learn more: http://www.ugandavillageproject.org/what-we-do/healthy-villages/obstetric-fistula/

13 Days in Kamuli: Repairing Fistulas, Transforming Lives

Obstetric Fistula is a condition not frequently heard of in industrialized countries, but here in Uganda it affects the lives of many women. Most often a result of prolonged and/or obstructed labor, fistulas develop when the pressure of the baby cuts off blood supply to the tissues of the vagina, bladder, and/or rectum while the woman struggles to give birth. The tissues die and a hole (a ‘fistula’) forms through which urine and/or feces can leak. It is a condition that is preventable through proper pre-natal care and doctor supervised childbirth, two things that women in poverty often make do without. Despite how common fistulas are here, many women go undiagnosed for years, shunned by their families and communities, and living under the assumption that they are cursed. Even if they manage to get diagnosed, surgical treatment is generally too expensive for most women from the villages.

As awareness of Obstetric Fistula has grown, efforts have been made to provide women with surgery free of charge. At Kamuli Mission Hospital, three fistula camps are held per year, where foreign doctors spend just over a week performing surgeries and doing check-ups. Due to the fact that so many women are unaware that their condition can be cured, Uganda Village Project dedicates substantial time and energy to discovering women suffering from obstetric fistula, and ensuring they get surgery. As a UVP intern this summer, I was extremely lucky to be able to accompany eleven fistula patients located by UVP to the fistula camp in Kamuli, and witness the beginning of their transformation.

While all of my time spent in Uganda this summer has been a tremendous learning experience, the 13 days I spent at the fistula camp will stand out in my memory as 13 of the most powerful days in my life. After my first two days of interviewing patients and hearing their stories, I had never felt more frustrated and saddened by the world we live in. However, after the subsequent days watching surgeries and tending to the recovering women, I am now full of hope and admiration for them, and in awe of the talented and compassionate doctors who come from so far away to help these women reclaim their lives.

All of the women had truly painful and inspiring stories, but a few were particularly moving in their illustration of the power of fistula surgery. Nabirye Efulansi was 19 years old when she first suffered from the condition, and it took 12 years thereafter before she was diagnosed. She is now 40 years old, and returning to the fistula camp for a third time, hoping to further alleviate her discomfort and improve her mobility. What makes her truly heroic is that, despite suffering from obstetric fistula, she manages to support herself and 9 other people. Through subsistence farming alone she manages to provide for 2 elderly people and 7 orphaned grandchildren, the eldest of which is only 13 years old. Her success would be remarkable for a healthy person, but for a woman with her condition, it is nearly unfathomable.

Atim Caroline is 19 years old, and has suffered from obstetric fistula for one year. She was attending boarding school when she got pregnant. Her baby died during labor, the father of her child left her – and she was left with fistulas. Although fluent in English, obstetric fistula forced Atim to drop out of school. She has been struggling to support herself through odd jobs and random acts of kindness from others. At such a young age, she has her whole life in front of her, and she confided that after surgery she hopes to go back to school to eventually become a doctor. One year younger than I, she withstood the 3 hour long surgery with the maturity of one resigned to her fate, hardly daring to believe it was actually happening. It is dangerous for fistula patients to invest energy in hope, as surgeries often need to be repeated multiple times. Yet, it is a truly beautiful thing to watch someone regain that hope. Checking up on her every day until I left, I began to see a delicate spark of optimism begin to develop, tentatively at first, and then with a growing sense of confidence. There is nothing greater for a woman who has lived with obstetric fistula, and I am so thankful that UVP helps to bring them that gift.

By Claire Lauer