I had heard the term “fistula” and knew it was a bad thing. However, until I red Nicholas Kristof’s Half the Sky, I really had no idea what it was all about. It was an eye-opener!
Obstetric fistulas (try saying that ten times fast) typically occur during prolonged childbirth. In developed countries, we resolve this situation with a C-section, thus virtually eliminating obstetric fistulas. However, many women in the developing world either do not have access to emergency obstetric surgery or don’t get to a hospital until it’s too late.
Obstetric fistulas cause urine and/or feces to leak from the affected woman’s body. This often results in the women being marginalized, shunned by their husbands, and destined to a life of extreme poverty and solitude. In fact, due to the stench that is caused by the leakage, these women are often forced to live in a hut on the outskirts of the village.
Those women with fistulas are the lepers of our time. ~Nicholas Kristof
The good news is that obstetric fistulas can be corrected with a fairly inexpensive surgery (around $450), thus giving life back to these ostracized women.
The rest of this blog post is about the Worldwide Fistula Fund, which focuses exclusively on prevention and treatment of obstetric fistulas. This information is based on content on their website as well as an interview with Mark Shaker, the executive director.
Worldwide Fistula Fund Overview
The Worldwide Fistula Fund (WFF) has been around for sixteen years. One of the founders, Dr. Wall was working in Nigeria as an anthropologist and became aware of the fistula problem. He decided to go to medical school so he could perform obstetric fistula surgeries and founded the Worldwide Fistula Fund, the first non-profit of its kind. He was committed to the West African region, so the organization has focused its efforts in this part of the world, and specifically in Niger.
Another reason for working in Niger is that it is one of the poorest and under-served countries in the world. As the WFF has been working relentlessly to build a fistula hospital in Niger, the goal has been to build a model of care that can be replicated elsewhere.
“And if it can be done in Niger, it can be done anywhere,” says Shaker.
Obstetric Fistula Surgeries
The team from WFF, including Dr. Wall and Dr. Arrowsmith, has been traveling to Niger quarterly for several years to perform these life-restoring surgeries. As part of the visit, the team trains surgeons in the region on obstetric fistula surgery. They also train nurses and other medical staff.
“One of the core values of WFF is to help build capacity in the region,” says Shaker.
Some women travel several days to reach the medical center where the surgeries are performed. Sometimes, there are more women than surgery spots. In this case, the women are asked to come back next quarter. It’s worth the wait for these women.
It is fixable! ~Mark Shaker, Executive Director, WFF
According to the WFF website, “estimates range as high as 3.5 million women with this condition in sub-Saharan Africa, with up to 130,000 new cases each year.” There is plenty of work to be done!
What About Prevention?
One of the topics I was curious about was the question about prevention. Obstetric fistulas have been a non-issue in countries with good maternal care for 150 years. So I wondered, what is being done to prevent obstetric fistulas from happening in the first place?
Shaker told me with great enthusiasm about their partnership with Health & Development International (founded by Norwegian Dr. Seim) in creating community-based prevention programs following the model that was used to eradicate guinea worm disease.
They educate tribal elders and community members on the causes of obstetric fistulas and even get permission from the expecting fathers to take his wife to the hospital, should he be away working the fields. There are also field workers who collect data about who is pregnant, etc to assess risk.
My favorite education trick Shaker told me about is the phrase “When the sun sets twice.” Meaning, if you have been in labor for more than full day, it’s time to go to the hospital!
I also asked about preventing teen pregnancies. Shaker indicated that this is a very sensitive topic in the conservative area in which they work. Rather than focusing on family planning or child marriage at this point, they work in other ways to ensure that the teenage mothers are as healthy as they can be by providing nutrion education and vitamins. There’s a lot of trust that has to be built up with a new program like this.
Danja Fistula Center
All the work from the last 16 years is finally paying off – big time! On February 6, surgeons in Niger will perform the first surgery at WFF’s Danja Fistula Center. This is the result of the hard work of the WFF to bring obstetric fistula surgery to Niger in a more permanent, impactful way.
The ribbon cutting ceremony will take place on February 11. What joy!
According to the WFF website, within five years the hospital will:
- provide care for up to 2,500 women with fistula
- train at least 30 doctors from Niger and other African countries in fistula repair
- develop community-based programs to aid in the prevention of obstructed labor (the major cause of fistula)
- institute far-reaching rehabilitation programs to help fistula patients develop economic opportunities for themselves and their families.
After the Surgery
So what happens to these women after they have a successful fistula surgery? Many have been shunned in their villages and do not want to go back. They also have nothing to go back to, no skills, and are illiterate.
WFF works with these women to train them in different vocations, teach them to read and write, and sometimes offers career opportunities like in the story of one charismatic patient who came to the WFF Fistula Center to get help after four failed surgeries. She took it upon herself to coach the first-timers through the whole process, helping prepare these patients for the surgery and recovery.
When she wasn’t able to get the surgery the first time, she came back the next quarter and provided the same orientation services, this time on request of the WFF. She is now a staff member!
The woman on the right (we’ll call her Maryama) is another example of a successful fistula surgery patient. She had lost her first child in the complicated childbirth that caused her fistula to develop. Due to the odor, her husband had forced her to move home with her parents. She thought her life was over. Then she heard about WFF and made the trip to have the surgery that would change her life. She was able to return back to her village and resume a normal life!
Read more about Maryama and other brave women at the WFF’s Stories of Hope.
How You Can Help
The WFF has a nice blog post that outlines ten ways to give to the organization. It is a creative list, and you should read all the options. Some of my favorites are:
- Spread the word about obstetric fistula by forwarding our newsletter, sharing our stories on Facebook or retweeting us!
- Donate stocks instead of cash!
- Start an online fundraiser on Crowdrise.
- Donate Delta miles to help our team get back and forth from Niger.
Now that you know about this condition and this marvelous organization, is there any way you can’t help?
This video from the CNN article, ‘Dead women walking’ find hope in corrective surgery, is informative and interesting to watch:
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