Before traveling to Uganda to interview patients at Kamuli
Mission Hospital with the help and support of Uganda Village Project, I had
done extensive reading and research. Fistula initially caught my attention as I
read Nicholas Kristof and Sheryl WuDunn’s Half
the Sky, and I decided to focus on fistula for my senior thesis as a
Sociology and Pre-Med major at the University of Notre Dame.
Visiting a fistula patient (left) in her home with the
Fistula Coordinator, Loy (right)
Obstetric fistula is characterized by an abnormal passageway
between the vagina and bladder. There are several causes for this condition, but
obstructed labor is the primary cause. During prolonged labor, the pressure
from the fetal head on the soft tissues of the mother’s vagina and bladder can
restrict blood flow—leading to tissue death [1]. As this tissue dies, it
sloughs off and creates a fistula [2]. Surgical mishaps can also lead to the
formation of a fistula.
As it is a largely preventable maternal morbidity, obstetric
fistula is almost entirely non-existent in the United States, so I knew that my
research would require collaboration with an organization working abroad. I
spent eight weeks in Uganda in June and July 2012 interning at a clinic in the
eastern region. Due to my familiarity with Ugandan culture and wonderful
experience last summer, I decided to start my search for an organization to
work with in Uganda. I stumbled upon the Uganda Village Project during the
course of my research, and I was instantly impressed with their fistula
outreach programs and involvement with the surgical camps at Kamuli Mission
Hospital. I contacted UVP, and we were able to coordinate my research. It was
incredibly exciting to find such a great organization to work with, and I could
not be happier with the partnership.
Kamuli Mission Hospital grounds
I was familiar with the paths to fistula development and the
long, winding paths to surgical repair for the small minority of women able to
negotiate their ways to treatment. Though I had an idea of what to expect
during my interviews, I found myself in awe of the strength and perseverance
embodied by the women I spoke with. Although many of the stories followed a
similar course, each was distinctly unique. All of the women were challenged:
some women were faced with poverty, others suffered from social stigmatization
due the incontinence that usually accompanies fistula, and some were rejected
by loved ones—husbands, parents, siblings, and friends. Yet, despite these
challenges, these women had been fortunate enough to receive care. Faced with a
devastating condition and often lacking sufficient social support, these women
had endured months, years, and even decades with obstetric fistula, but had
finally gotten the care they so desperately needed.
Interviewing a former fistula patient (right) with my
translator, Hatika (middle)
When so many women suffering from fistula fail to ever
receive care, how did these women do it? That was the focus of my interviews. I
wanted to know what tipped the scale for these women. Though my data analysis
is still in progress, I have identified several recurring pathways to care for
these women.
The Social Network: Many
women reported hearing about Kamuli Mission Hospital and Uganda Village Project
from friends, community members, and neighbors. These individuals were key in
providing a gateway to care for women suffering from fistula. They spread the
word about surgical repair, successful treatment at Kamuli Mission Hospital
during the fistula camps, and often even contacted UVP’s Fistula Coordinator to
speak to these women.
UVP Outreach and the
Fistula Coordinator: Other women initially learned about the fistula camps
through Uganda Village Project outreach initiatives for fistula. After learning
about fistula, community members would often direct the UVP outreach staff to a
woman in the community known to be suffering from that condition. Fistula
coordinators played an important role informing women about the surgeries and
providing them with the courage to undergo surgical repair.
Radio Advertisements:
Some women also learned about Kamuli Mission Hospital’s fistula camps via
radio ads. For many, this was the first time they had heard of treatment for
their condition.
These three main pathways to care are not mutually
exclusive. Some heard about the surgery on the radio, but were only convinced
to seek care once they heard of another woman’s successful surgical repair.
Other women did not rely on any of these patterns in their journeys to care at
Kamuli Mission Hospital.
Despite the uniqueness of each story, nearly every woman
expressed her gratitude to Uganda Village Project, Kamuli Mission Hospital, and
the visiting fistula surgeons. The fistula camps have given these women the
comfort that they are not alone in their problems and hope for a better future.
My translator Hatika (left) with two fistula patients
Like the women I spoke with, I am very grateful to the
Uganda Village Project and Kamuli Mission Hospital staffs. Everyone was
incredibly accommodating and helpful during my research, and I cannot thank you
enough for your help. Uganda Village Project is doing amazing work in the
Iganga region, and it was inspiring to hear how life-changing surgery has been
for these women.
References
[1]
Cook, R. J., B. M. Dickens and S. Syed. 2004. "Obstetric Fistula: The
Challenge to Human Rights." International Journal of Gynecology &
Obstetrics 87(1):72-77.
[2] Hilton, P. 2003. “Vesico-vaginal fistulas in developing
countries.” International Journal of
Gynecology and Obstetrics 82(3):285-95.
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