Life as a Social Outcast - Part 4 of 4 - Angola

The following is an interview with Angela Deane, a Canadian nurse who volunteered at the Clinica CEML in Lubango, Angola for three months earlier this year. Angela dedicated a significant amount of her time to strengthen an obstetric fistula program at the clinic.

---------------------------

Adam: What caused the spark that moved you to begin your work with fistula patients?

Angela: 99% of them are illiterate. When I arrived at CEML in March 2010, I realized how many fistula women were here. On an ongoing basis there are probably about 15 to 20 that stay in the neighbouring patient’s village. There are just over 30 women currently in the healing process. These women spend so much time at this facility. They stay in our patient’s village day in and day out because the clinic is in a somewhat isolated location. Some patients spend up to two years in our patient’s village, essentially creating for themselves a temporary home beside the clinic. It was with this in mind that I began a daily program for these women.

Adam: So you wanted to work with these women. You had seen them daily in and out of the clinic for consults, treatments, tests and surgeries. What kind of a response did you receive from these patients when you approached them with this idea?

Angela: My first step was to ask them what they wanted to learn. No matter which woman I asked, the answer was the same – mathematics. I am not sure where the idea of developing math skills arose. However, I can speculate that this skill will help these women become local-budding entrepreneurs. And after math, the women wanted to learn how to sew.

Adam: So you started by teaching them math. Where were these women in terms of math knowledge?

Angela: I have seen fistula patients from seventeen to forty years of age. Some of them have had the opportunity to go to school. The highest grade level I have found, out of any of these women, is the equivalent of a Grade 4 level. Before our classes, two or three of them had never even held a pencil. Holding a pencil for the first time, these women could not help but laugh with excitement. They held the pencils right side up and upside down, experiencing the feel of these writing utensils with great curiosity and interest. The first day we spent going through numbers. They knew how to count, but there was no visual representation about what a number was on paper. The more advanced math students are adding double-digit numbers up to 40. The progress these women have made to date is amazing!

Adam: Wow! Although some women have a Grade 4 level education, the learning gap is quite substantial. Have you been teaching these women other skills as well?

Angela: So some of them are learning how to write numbers. However, one of the most shocking moments for me was when I realized that these women cannot put their names on paper. Some are now learning how to write their names.

As the world becomes more global and urbanized, I feel for these women who come from these remote tribal locations. They come to our clinic in the city and have no idea how to write their names. They don’t even know their birthdates. Writing their names is an opportunity for them to regain their identities. Society has labelled these women as outcasts who smell as a result of their conditions.

That was one of the most important things I could teach them – giving them the ability to write their names. We are also at the point where women can now write the date and identify, in words and on a map, where they live.

Adam: I saw it for myself earlier today. The women are energetic and eager. There appears to be such a drive to learn and you seem to have gained the love and affection of these women. Have there been any special moments for you through this process?

Angela: They love to come to our classes. They are so thirsty and hungry for learning. When the women arrive in the early afternoon, they are eager to do math, write and sew. We are also starting to read a little bit as well.

One girl came to our morning service a few weeks ago and she was trying to sing by reading from the song book. She sat there gazing at the sheet but could not read any of the words. She started crying, and approached me with the hope of learning to read. She was deeply saddened because she felt her inability to read meant she was unable to sing to God.

Adam: You are truly providing these women with opportunities to recreate their identities and find their places in society. They live in regions, usually isolated from the rest of the community. The stories of some of these women outline the struggles they face dealing with their fistulas. What is it about these women that you find surprising?

Angela: I am still surprised at how traumatic their stories are. Some of them were at such young ages when they lost their first child and had their first fistula. Others have lived for about fifteen years with fistulas, having been abandoned by their families and communities. It is quite a life of suffering.

Adam: The stories really are quite eye-opening. Being able to talk to some of these girls to hear their stories has been rather emotional. These women will leave the clinic and return to their homes after all their treatments and necessary surgeries are complete. What do you hope these educational opportunities you are providing to these women will allow them to do in the future?

Angela: I hope they will find physical and emotional healing and that they will be stronger to return to their communities. I try to teach them about what it means to live with a fistula and the importance of sharing this information with others. I want them to understand that pregnancies are not wise at the age of thirteen or fourteen, and that there is nothing wrong with visiting a hospital when pregnant.

I want these women to be able to make meaningful contributions to their communities again. If they are here for a year or a year-and-a-half, they can learn skills that will allow them to go back to their communities and impact the lives of others.

Adam: And where do you see this vision moving in the years to come?

Angela: I don’t think this country is going to improve until women are empowered and are able to make their own decisions. Women need to have the opportunity to learn about family planning and safe birth practices. There also needs to be accessibility in rural areas for safe pregnancies.

In the near future, I would love to have sewing machines for these women at the clinic. I have taught them hand-sewing and they have made beautiful purses, skirts and headscarves. If they have sewing machines, this could develop into an employable skill.

In the long run, I think it would be beneficial to start a school for them, so that they can be developed as individuals. By educating these women, you are also empowering them.

Adam: Thank you Angela for sharing your work and vision. The work that you do is truly magnificent and very meaningful for the women you have worked with. There is no doubt that your work with these young women will transform them into involved members of their communities. I applaud your work and thank you, on behalf of the women you have taught and shared your time with. Thank you.

---------------------------

Over the past few weeks, I have shared the stories of young women dealing with obstetric fistulas. I encourage you to continue learning more about this issue. The World Health Organization estimates over two million women have untreated obstetric fistulas in sub-Saharan Africa and Asia.

Some ways that women develop fistulas - like the women in the stories I've shared with you - are completely preventable. Many organizations work closely with fistula patients and education is one of the best ways to empower these women. I encourage you to learn more about this issue and the stories of other fistula patients. It is only through educating ourselves that we can provide a voice to some of the voiceless.

Life as a Social Outcast - Part 3 of 4 - Angola

Below is the story of a 22 year-old fistula patient at the Clinica CEML. She is one of many fistula patients currently at CEML. Her story, while unique, is a representation of the lives of many women struggling with fistulas.

I have combined her responses to my questions into a story. This interview conversation was in Portuguese, and I have translated it into English.

---------------------------------------

Her Story:

I am now 22 years old. My problem started in November 2006. I was pregnant for nine months and then passed a week at home with lots of pain. I went to a hospital in Cavango with my mother. I pushed and pushed but the baby came out dead.

Urine and feces passed through me constantly. I returned to my house in December 2006 and lived with my mother and father. I lived there for four years.

My husband left me after my baby died. He was 19 years old at the time and I was 18 years old. I do not speak to my husband anymore. He has another wife now. He never visited me at the hospital.

I saw Dr. Steve [Foster] when he visited Cavango in July 2009. I went to the consult alone. I am not sure why I went alone, but my parents did not come with me. Someone took me to the clinic in Cavango. My mother passed away in November 2009 and I used to speak to my father.

Dr. Steve and the team at Cavango suggested I come to the clinic in Lubango for a VVF repair. I came [to CEML] in April 2010. I came to Lubango with my niece. My niece and I stay in the patient’s village, [the living quarters beside the hospital for post-operative patients and their families]. Since I have been here I have still not spoken to my father. He has not yet visited me while I have been here.

I had my first operation on April 22, 2010. My first operation was to have a colostomy because of a recto-vaginal fistula. The second operation happened on June 8, 2010 to repair the recto-vaginal fistula. I will now be waiting in the patient’s village to see what the results of my repair are. If it is successful, I will have a third operation to repair my vesico-vaginal fistula. [Note: As with most repairs, more than one operation usually takes place before fistula repairs are completely successful.]

Every week I receive a 2000 Kwanza stipend. With this money I buy fish and other food for me and my niece. The money I receive helps me a lot. I like our learning classes a lot. The classes are full of mathematics and sewing. I have sewed a purse. I like these classes a lot. I learn from the nurses and my teachers. I want to learn how to read some more and to study. [Note: Many fistula patients began by learning how to write their names and doing basic single-digit addition.]

When I finish my post-operative revision in September 2010, I want to continue to study. I stopped studying at the fourth grade and want to study more. I want to pass my exams and become a teacher.

I do not know if I will get married again. But if I do, I want children in the future. I want two children. Only two children. When I finish my consults in Lubango at this clinic, I plan to return home to live with my father.

---------------------------------------

The final part of this series will be an interview with Angela, a nurse who spent three months volunteering at the Centro Evangelico de Medicina do Lubango (CEML). Among other projects, Angela worked extensively with the obstetric fistula patients over the months.

Life as a Social Outcast - Part 2 of 4 - Angola

Below is the story of a 17 year-old fistula patient at the Clinica CEML. She was quite open about her experiences and very appreciative of the opportunity to share her story with me. Please keep in mind that she is one of many fistula patients currently at CEML. Her story, while unique, is a representation of the lives of many women struggling with fistulas. She has allowed me to share her story with friends and family, but photos and names have been removed,

I have combined her responses to my questions into a story, as opposed to a back-and-forth dialogue. This interview conversation was in Portuguese, and I have translated it into English.

-----------------------------

Her Story:

I am 17 years old and was born on December 1, 1993. I used to live in a small town called Chitembo with my parents and three siblings. My parents do not work. My father has four children, while my mother only has three children. When I was younger, our family moved to Cavango, where we have been living ever since.

In 2008, at the age of fifteen, I became pregnant with my first child. My husband was two years older than me and fathered my baby. After nine months, I started having pains in my body. I remained at home for two days, hoping for the pain to go away. This was in early 2009. As the pain continued by the second day, I was taken to a hospital in Quito. There, I learned the news that my baby had already passed away.

At the clinic I was cut down below to make room for the baby to come out. But the cut was never closed. When my husband found out that my baby had died and I had a fistula – urine was constantly seeping out – he left me. I had a husband. But he didn’t want me anymore. So he left me. I do not speak to him anymore.

My illness began in 2009. I remained in Quito for some time before returning to Cavango. After a while, a family friend suggested I visit Dr. Steve [Foster] when he was visiting in Cavango. My friend had already had a successful operation and her family told me to come here with the same kind of illness.

I decided to go to the Cavango clinic with my father in April 2009. I had my first operation in Lubango with Dr. Steve in October 2009. A second operation happened in late October 2009 because the first operation did not close up the fistula properly. That was my second operation. I had a third fistula repair operation in March 2010. This too did not successfully repair my fistula. A fourth operation happened on June 17, 2010. Following my recent operation this month, I will have my catheter removed and will do a post-operative exam in July. I hope all will be properly repaired.

For the past eight months, I have been living in the patient’s village with my father. [Note: Several other women have expressed concern with her father’s excessive drinking in the patient’s village]. The classes that have been organized by CEML have been very good. I feel great. I really like these classes because I can learn a lot. I want to learn here. I am learning everything here – math, writing and reading. I also like to sew a lot. I have made my own purse, which I use to carry my hospital card and documents.

When I finish with my treatment at the clinic, I want to study math, science and Portuguese. I do not want a husband. I do not want any babies. I will continue to study so that I can be a nurse when I grow up.

-----------------------------

The next part of this series will be another story as another example of another woman who has come to CEML for a fistula repair operation.

Life as a Social Outcast - Part 1 of 4 - Angola

The following details and information about obstetric fistulas are based on an interview with Dr. Stephen Foster, medical and general director of the Clinica Centro Evangelico de Medicina do Lubango (CEML) in Lubango, Angola. Dr. Foster was born in Brantford, Ontario, but spent most of his childhood living in Zambia, where his father Robert Foster, MD, worked as a missionary surgeon. He completed his medical school at McMaster University in Hamilton, Ontario and later completed his general surgical training through the University of Toronto’s Gallie Course. He returned back to Angola over 30 years ago, where he has been serving as a surgeon at his CEML clinic and numerous other hospitals. Earlier this year, Dr. Foster received one of North America’s highest honours in the medical field, the 2010 Royal College Teasdale-Corti Humanitarian Award.

What is a fistula?
A fistula is an abnormal communication between normal structures. The bladder, vagina, urethra and rectum are all normal structures in the body. When there is an abnormal communication between any of these normal structures, this can lead to urinary incontinence or an inability to control the release of stool. A fistula is just a technical term for an “abnormal connection” in the body.

What are the most common causes of obstetric fistulas?
Usually the most common cause of an obstetric fistula is a prolonged labour period for women. Most women do not have frequent medical consultations during pregnancies. Women tend to experience pain, particularly during the process of birth.
During labour, forceful uterine contractions or the pressure of a baby’s head against soft tissues can lead to obstetric fistulas in women. Adolescent pregnancies also tend to increase the risk of fistulas. Pregnant girls between the ages of thirteen and eighteen do not have fully developed female reproductive organs.

How widespread is this issue?
Some sources suggest that there are about two million women in sub-Saharan Africa that live with fistulas. Hundreds of women in Angola suffer from obstetric fistulas. For every woman who presents with a fistula during medical consultations, there are many more women suffering from the same problem. These women are sometimes in the rural areas of Angola, far from clinics, medical posts and other health care facilities.

Presence of fistulas outside of sub-Saharan Africa
In North America and Europe, a fistula is usually a complication of an obstetric misadventure, which can include challenges with Caesarean sections and tearing. Most of the fistulas in this region are caused by lack of proper attention during the birthing process. Globally, it is estimated that 50,000 to 100,000 women are diagnosed with an obstetric fistula annually. This problem affects women of all ages – young and old. However, in North America and Europe, these situations are quite rare.

Women and their communities
Women are usually considered to be outcasts when they have fistulas. In sub-Saharan Africa, including here in Angola, cultural habits result in families marrying off girls at very young ages.

The use of “traditional and bush medicine” to “treat” women
The use of herbal medicines usually results in extended uterine contractions in women. Sometimes this “treatment” works like a charm. But more times than not, this can destroy the uterus.

Cost of Fistula Repairs
For the year beginning July 2010, the Fistula Foundation has provided CEML with a grant that covers 100% of each fistula patient’s operation and associated expenses – travel, lodging in the patient’s village, a weekly food stipend and treatment at the clinic. At present, the total cost for each fistula patient at CEML is about USD $1100.

Fistula Repairs at CEML
It is possible to prevent fistulas. Adolescent girls, and all pregnant women for that matter, should have medical consultations in order to make sure pregnancies move along smoothly. This can avoid surprises during labour periods. 90% of women who have fistulas have a possibility of having simple surgeries to repair the fistulas. These fistulas can be repaired. When he first started, Dr. Foster had about a 50% success rate on a woman’s first repair operation. After having done over four hundred fistula repairs in Angola, his success rate has significantly increased. For some of the patients, the 10% of women requiring more complicated surgeries, Dr. Foster has not been willing to call it quits on them, believing he should try and try again.

From July 2009 to the end of June 2010, CEML has done about 80 fistula repair operations. The recent grant from the Fistula Foundation will fund about 100 more fistula repairs between July 2010 and July 2011.

CEML has only hit the tip of the iceberg. Awareness about the work at CEML is spreading through Angola, and more and more women are finding their way to the clinic for proper treatment.

--------
Photo credit: Seth Cochran, Founder at OperationOF

The next part of this series will focus on the story of a 17 year-old fistula patient at CEML.

Life as a Social Outcast: The Story of Vesico-Vaginal Fistula Girls

Over the past fourteen days, I have seen over twenty women that share the same problem – vesico-vaginal fistulas (VVF). Each woman not only shares the same medical diagnosis, corrected by an operative procedure, but also the challenges of exclusion and abandonment by families and communities.

When I last traveled to Angola from January to March 2009, the number of VVF cases was particularly astounding. Women of all ages and social classes traveled from across Angola to receive operative treatment for their urinary problems.

The issue was one that I was aware of and had learned about a great deal. However, I never thought of sharing the story of a VVF patient. This time around, while I am back in Lubango, Angola for two months, I have decided to share this story. I have been back for less than two weeks and I have already seen pre-operative consultations, VVF operations, post-operative check-ups and recovery patients. This is a story that needs to be told.

Over the next two weeks, I plan to share this story in a four-part interview series. The first part of this series about vesico-vaginal fistulas will be an interview with Dr. Stephen Foster, a medical doctor and surgeon based in Lubango, Angola to introduce the issue, the extent of its spread across Angola and its impact on lives. The second and third parts of this series will explore the lives of women affected by VVFs and discuss personal issues and societal challenges faced. The final part of this series will take a look at the work of two volunteer workers – a primary school teacher and a labour and delivery nurse and their tireless efforts to help these VVF women integrate back into society.