Guest Blog by Dr. Cambey Mikush
I am Cambey Mikush, a recent graduate from Washington University in St. Louis with a doctorate in Occupational Therapy. I became aware of the devastation that is inflicted on women with obstetric fistula right before starting my graduate program in 2010. The more I learned, the more it became clear to me that women with obstetric fistula were experiencing a sudden and significant change in their ability to participate in their daily activities. Women who develop obstetric fistula not only have surgical needs but also commonly experience weakness in their legs and pelvic muscle due to the compression of nerves and vasculature during the arrested birth. Initially, my knowledge of the issue was limited to what I had read in the media and a couple scientific journal articles where the role of rehabilitation was often not discussed in depth. As I dug deeper, I learned that physical therapy plays a very important role in the rehabilitation of these women and has been incorporated into fistula hospitals like the Hamlin Fistula Hospital in Ethiopia and the Danja Fistula Center in Niger. However, occupational therapy is formally non-existent in these fistula care models. I felt that occupational therapy could serve a significant role in helping these women return to their homes and live independently, no matter the surgical outcome.
The word occupation encompasses everything a person does on a daily basis that is necessary and important to them such as bathing, dressing, cooking, working or attending community events. Occupational therapists work with people with both physical and mental disabilities, using valued occupations to help restore roles, meaning and identity to people’s lives after an injury or illness. Because of occupational therapy’s unique perspective on daily functioning, I felt it to be a critical component in helping women with obstetric fistula return successfully to their communities.
As a part of my doctoral degree, I wanted to begin defining the role of occupational therapy in helping women with obstetric fistula. In 2011, I enthusiastically shared my ideas with Dr. Tracy Spitznagle, a women’s health physical therapist working at Washington University in St Louis, and Dr. Lewis Wall, a urogynecologist and the founder of the Worldwide Fistula Fund (WFF). They immediately welcomed me to the team and have been strong mentors ever since. Through the WFF and grant support from the Gephardt Institute, I have had the opportunity to travel to the Hamlin Fistula Hospital in Addis Ababa, Ethiopia to assess its programs and provide suggestions on how to improve the rehabilitation services from an occupational therapy perspective. Through this experience, I have gained a better understanding of the functional challenges women with obstetric fistula face pre- and post-surgery. Collaborating with the staff at the Hamlin Fistula Hospital we have begun to identify ways to address these challenges. Although I still have a lot to learn, it is clear to me that occupational rehabilitation is a critical component of the fistula care model.
One way we are identifying these functional challenges is by conducting focus groups with women before they receive treatment. The information gathered will be used to help us develop a comprehensive quality of life outcome measure demonstrating the functional improvements of women from baseline to discharge, and for months after treatment. This outcome measure will provide guidance for understanding the level of function needed to return to daily activities in the community after treatment. The measure will also identify potential gaps in services at the hospital. Although the project is in its beginning phase, we have assembled an experienced team of Hamlin Fistula Hospital staff including the Beletshachew Tadesse (Rehabilitation Manager), Hanna Hansemo (Social Worker) and Karen Ballard (Research Coordinator), among others. Two focus groups have been completed and we are already obtaining useful and interesting information to help guide future rehabilitation programs and the development of the outcome measure.
Although we still have focus groups to conduct and data to collect, I am amazed at how each woman’s story is different from the next. Many often over-generalize the experiences of women with obstetric fistula, but these focus groups have reminded me that no two women are the same. One woman we spoke to has lived with obstetric fistula for 20 years. She sobbed as she told us about the impact the injury has had on her ability to walk, work, eat and be a productive member of her community. However, another young woman in the same focus group has lived with fistula for one month, spending most of that time in a general hospital before being transferred to the Hamlin Fistula Hospital. Although developing a fistula was traumatizing for her, she was encouraged to seek medical care early on and therefore has not noticed any drastic changes regarding her relationship with family and friends and her ability to participate in daily activities. It is critical that a healthcare team understand each woman’s unique story to be able to fully address her individual challenges and capitalize on the resources, both social and economic, available to her.
Despite the different experiences these women have had with fistula, some common themes are beginning to emerge from the focus groups. The first focus group consisted of three women, all stating multiple times that, after fistula treatment, they want to be healthy and able to work. The ability to work provides every person with a sense of purpose and a means to support a family. Work can also be a social outlet, allowing an individual to be an active member of a community. Constantly leaking urine or feces or dealing with prolapsed organs can impede a woman’s ability to work. Post surgically, some women with obstetric fistula may need to learn how to compensate for their loss of function and find ways to work, despite leaking urine. Other women may be unable to maintain their work responsibilities due to an inability to carry heavy loads or an altered gait caused by foot drop or muscle contractures, common comorbidities associated with obstetric fistula. At the Hamlin Fistula Hospital, the physical therapists work with women with foot drop, contractures and deconditioning to improve strength and mobility, prior to surgery in an effort to help women return to work after they have received their repairs. In addition, the physical therapists also work on improving pelvic floor function in patients not fully cured by the surgery to decrease urinary or bowel incontinence and allow them to return to their community. Another integral part of the rehabilitation process at the Hamlin Fistula Hospital includes a team of community re-integration specialists. This specialized rehabilitation team teaches women income-generating skills to help provide them with financial support upon returning to their villages. Thus far, the women participating in the focus groups are reiterating the importance of concentrating a portion of rehabilitation on addressing the skills needed to be able to work independently.
Although the Hamlin Fistula Hospital does not have an occupational therapist on staff (there are currently no occupational therapy schools in Ethiopia), they are incorporating many occupational therapy principles that are critical to ensuring that women return home as independent as possible. As a member of the WFF Rehabilitation Advisory Counsel, I will continue working with the other counsel members to identify ways to improve rehabilitative services at the Hamlin Fistula Hospital and other fistula care centers to ensure that women are able to return home successfully, no matter the surgical outcome. Our ongoing research project with the staff at the Hamlin Fistula Hospital will continue to tell us what these women need and want to help them return to their villages and live fulfilling lives.
The Worldwide Fistula Fund is sad to note the passing of Dr. Leonard Wall. Dr. Wall was the father of the WFF’s founder Dr. Lewis Wall and WFF’s current treasurer Dr. Terry Wall. In his memory, WFF has established the Dr. Leonard Wall Memorial Fund. Dr. Leonard Wall was a long time advocate for women around the world and a tireless supporter of the Worldwide Fistula Fund.
Dr. Leonard A. Wall, MD, 92, of Leawood, KS, passed away on December 24, 2013. Dr. Wall was born on March 20, 1921 in Domby, Oklahoma. His early education came in a one-room country schoolhouse. After graduating from high school, he enrolled at the University of Oklahoma to study biology with the hope of eventually fulfilling his life-long dream of becoming a doctor.
His education was interrupted by military service in the US Army Air Corps during World War II. He married his childhood sweetheart, Evelyn Balzer, just before he was shipped overseas to fight the Nazis. Stationed in England, he was a co-pilot flying B-17 bombers when his plane was shot down over Germany in early 1945. He was the last man to make it out of the dying aircraft before it exploded. Listed as “missing in action,” he was presumed dead. In reality, he had become a German prisoner-of-war. After his POW camp was liberated by Gen. George Patton’s Third Army, he was reunited with his young wife and resumed his education.
Dr. Wall graduated from the University of Oklahoma School of Medicine in 1951 and subsequently undertook residency training in obstetrics and gynecology at the University of Kansas. He was a pioneer in laparoscopic surgery, fetal monitoring and urogynecology. After completing his residency training, he became the only obstetrician-gynecologist in central Kansas, practicing in the university town of Manhattan. Two years later, he moved to Kansas City where he was in active practice for 35 years. He became known as “the obstetrician’s obstetrician.” He pioneered the use of fetal monitoring, obstetrical ultrasonography and the development of regional referral centers for high risk pregnancies. He served on the Missouri Maternal Mortality Committee and was the President of the St. Luke’s Hospital staff. Quiet, humble and unassuming, he was noted for his dedication to medicine, his compassionate care of patients and his service to his community. Years after his retirement, St. Luke’s Hospital recognized his contributions by naming the hospital urogynecology laboratory in his honor.
Dr. Wall was also the founding member of the board of directors of the Worldwide Fistula Fund (WFF). He made trips to Nigeria, Ghana and Ethiopia to further work among women with obstetric fistulas. He took great pride in the opening of WFF’s Danja Fistula Center in southern Niger in 2012. In recognition of his contributions, the outpatient clinic at that institution was also named in his honor.
A lifelong learner, Dr. Leonard Wall took special pride in medical education and was beloved by his residents who did their clinical training under his guidance, regarding him as the model physician. His two sons, Leonard Lewis Wall and Terry John Wall, both entered medicine.
Dr. Leonard Wall was preceded in death by his loving wife of 65 years, Evelyn. Survivors include his two sons, Dr. Terry Wall and Dr. Leonard Lewis Wall, his daughter-in-law, Helen, and his two grandsons, Jimmy Wall and Thom Wall.
Memorial contributions may be sent to the Dr. Leonard Wall Memorial Fund at Worldwide Fistula Fund, 1100 E. Woodfield Road, Suite 350, Schaumburg, IL 60173 or online at worldwidefistulafund.org. Fond memories and condolences for the family may be left in the comment section below.
The international community is increasingly using a designated ‘day’ to highlight issues that need greater global attention. Two of these days had particular resonance for us here at the Worldwide Fistula Fund─International Day of the Girl – October 11th, and The World Food Day – October 16th.
International Day of the Girl reminds us that in many parts of the world, girls do not have the opportunity to go to school, determine when or who they will marry, when to have children, or even whether they can seek medical help during labor. Giving girls the opportunity to grow up before they are married, to be children before having children, and to learn in schools surrounded by their peers benefits everyone.
One of the tragedies of Obstetric Fistula is that it is an injury suffered by girls. Girls who are married young, sometimes as young as eight, can be pregnant by age 12 or 13, before their bodies have grown enough to give birth. A girl of 13, suffering through a painful, prolonged labor without skilled medical attention can develop fistula, a condition that will impact the rest of her life.
We hope that someday soon, International Day of the Girl will no longer be necessary, and girls will be able to grow up and take ownership of their bodies and lives, without needing a day dedicated to giving them this basic human right.
World Food Day is a day devoted to the knowledge that many people around the world suffer from a lack of access to food. It is estimated that about 840 million people suffer from chronic hunger—not having enough food to be able to live an active and healthy life. To put this into perspective, there are approximately 317 million people living in the US, the third most populated country in the world, and yet, that total population would have to more than double in size in order to reach the number of people that are suffering from chronic hunger worldwide.
In areas with food insecurity or scarcity, it is often women and girls who have less access to healthy foods. When hunger is sustained, it can lead to malnutrition, which leads to women and young girls having more difficulties with pregnancy and childbirth.
At the Danja Fistula Center in Niger, patients are given free, nutritious food. Patients who are too weak or malnourished to undergo surgery upon arrival, remain at the Center until their bodies are strong enough to endure the repair surgery, as well as the recovery process. It is important in the recovery of these women, not to have to worry about where their next meal will come from and instead, spend their time focusing on healing.
Obstetric Fistula is a very specific type of injury, yet, providing holistic, multi-tiered care for women with fistula is one of our core values. We understand that there are many problems faced by women and young girls that are universal, and fistula is just a part of these. We are happy to recognize and celebrate every day that promotes the wellness and well-being of women everywhere!
We need your help. Please help Worldwide Fistula Fund remain on the Top-Rated list of GreatNonprofits.org by writing us a positive review of what WFF means to you. Please click on the below link and write your review today. We only need 10 more to achieve this award!
As schools start and vacations end, Labor Day draws a close to summer and welcomes in fall, while Rosh Hashanah ushers in a new year. The beginning of fall is the traditional time to say goodbye to the laid-back pace of summer, and kick off a new beginning. As an organization, WFF works throughout the year to bring new beginnings to women across Africa who, for some, have spent years of their lives battling the stigmatisms associated with having Obstetric Fistula.
This summer was a busy time for us here at WFF. As many of you know, WFF was featured in the New York Times in a beautiful and moving article by Nicholas Kristof. We were also honored by our upcoming inclusion in the Giving Library’s collection of organizations, and their wonderful video production of our Board of Director’s Chair, Nancy Muller, BA, MBA, PhD. And finally, Dr. Lewis Wall, the founder of WFF, was featured in an article in the St. Louis Post-Dispatch.
While much attention has focused on the Danja Fistula Center in Niger, WFF has also several other important programs that we support across Africa. Our work is to prevent and repair Obstetric Fistulas, and to develop programs to assist women with their new lives after fistula. What we want is a world without fistula, and a world where women who have suffered the injury in the past can live successful, dignified lives.
This need stretches beyond Niger. Therefore, our attention and assistance stretch as well. In the coming months, we will include information and new voices from our programs and projects in our newsletters, letting you meet and know the wonderful partners with whom WFF works, and the ways in which we offer assistance to women across Africa, such as Terrewode, an organization which assists women with Obstetric Fistula in Eastern Uganda to receive counseling, support and treatment. In Ethiopia, WFF has established relationships with Hamlin Hospital in Addis Ababa and Makalle University College of Health Science. There is also an ongoing need for better understanding effective pre- and post-operative therapy for the pelvic floor muscles and other effects of obstructed labor.
WFF is fortunate to have a wide variety of generous, dedicated supporters, and we look forward to introducing these programs and people to our many supporters throughout the world. One of the joys we have at WFF is being able to read all the notes and emails that arrive in our mailbox daily. It is a pure joy to know that we are supported by such a wide variety of generous and dedicated people, and that we are then able to extend that generosity and dedication to help women across Africa. If you would like to share your story of supporting WFF, we encourage you to send us an email. Selected stories may be included as excerpts in future newsletters.
Some Valuable Links Include:
Aid for Africa
The Giving Library
Great Nonprofits: Top-Rated Program
Great Nonprofits: Write a Review
New York Times Article
St. Louis Post-Dispatch Article
Dr. Lewis, founder of Worldwide Fistula Fund, recently was featured in the St. Louis Post-Dispatch for his efforts in helping women with obstetric fistulas. Below is an excerpt from the article:
She hadn’t even had her first period before getting pregnant, Dr. Lewis Wall recalled. Like most girls in parts of sub-Saharan Africa, she had no choice in whom to marry or when to have children.
And like so many whose bodies aren’t ready, the 12- or 13-year-old girl had a terrifying and painful labor that lasted for days. The trauma left her with a stillborn baby and damaged tissue between her bladder and vagina. She constantly leaked urine. She smelled foul.
The girl’s husband and family rejected her. She was forced to live alone, feeling cursed, begging for food on the edge of her village.
The damage the girl suffered — an obstetric fistula — can also occur between the rectum and vagina, leaving victims unable to hold their wastes. The injury can be easily fixed. In the United States, fistulas are almost nonexistent because of access to C-sections.
But in parts of Africa, a fistula means a heartbreaking life of isolation and shame.
“Many women who have these injuries are little more than girls themselves,” said Wall, professor of obstetrics and gynecology at Washington University School of Medicine. “And when they get these injuries, their lives are basically over.”
It is estimated that more than 3 million of the most impoverished women in the world needlessly suffer in fear because of obstetric fistulas. And thousands of new cases occur each year.
Wall’s goal is to help every single one.
Nearly 20 years ago, he founded the Worldwide Fistula Fund. His dream was to raise enough money to open a free hospital for fistula repair in a remote area in Niger.
Last year, that dream finally became a reality with the opening of the Danja Fistula Center, a 42-bed hospital that has already restored dignity and hope to more than 300 girls and women.
But Wall isn’t stopping there.
Fistulas, he said, are a symptom of a pervasive human rights violation that shakes him: the oppression of girls and women.
“They are victims in a very real sense, because of their biology and their social environment where they live. And in my mind, that’s not right,” Wall says. “It’s a social justice issue on top of a medical issue that makes the medical issue so much worse.”
The greatest health disparities between rich and poor countries, he said, are in the areas that affect women. The gaps are in maternal death, childbirth injuries and infant mortality.
Click here to read the full story.
Photo Courtesy of Fistula Care/EngenderHealth
It is with great sadness that Worldwide Fistula Fund has learned of the death of Dr. John Kelly, who had been, for so many years, a storied champion in the battle against obstetric fistula in the developing world. His commitment began in 1967 when he traveled to a hospital in rural Nigeria, where he preformed his first fistula surgery. Since that first surgery, Dr. Kelly provided care to over 9,000 women. After retiring from his practice in England, Dr. Kelly devoted nine months of the year to fistula surgery and traveled to some of the poorest countries to provide fistula care, including Sudan, Pakistan, Angola, Ethiopia, Ghana, Kenya and many more. For the women he helped, he offered the opportunity to rebuild their lives free of the difficulties and stigma that having a fistula can bring. His surgical work ethic and stamina were utterly remarkable.
Dr. Kelly believed that it was as important to teach communities how to prevent fistula as it was to teach surgeons how to repair them. He trained many surgeons and medical professionals throughout the world, and was dogged in his determination that it was as necessary to work to create policies to prevent fistula in the first place. He once said, “Some people may say you’ll never prevent [fistula]. But we must prevent it! It’s the only complete cure we have.”
His life was spent helping others in need. He will be remembered for his warm smile and his amazing commitment to those who needed him the most.
Thanks to all the work and incredible generosity from all our supporters, Worldwide Fistula Fund was able to realize a dream last year in the opening of the Danja Fistula Center in Niger. Several years ago Nicholas D. Kristof first wrote about Worldwide Fistula Fund and recently returned to the center to write a new op-ed for his column in the New York Times.
The fistula center was the dream of Drs. Steve Arrowsmith and Lewis Wall, and in keeping with the original vision of having the center be run by Africans, Dr. Itengre Ouedraogo, a surgeon from Burkina Faso, has been trained to be its medical director. Danja Fistula Center handles some of the toughest cases of obstetric fistulas in the region and offers so much more to its patients than just surgery, with the reintegration program teaching women skills that will ultimately help them become better prepared and educated to what they can achieve in life.
Nicholas Kristof highlights the story of Hadiza Soulaye who doesn’t know her age and was married off to her uncle before she started menstruating. A year after marriage, she was pregnant and developed an obstetric fistula during three days of labor. Not only did she lose her baby but when she returned home she was ostracized from her community and kicked out of her home by her husband. Recently, Hadiza learned of the Danja Fistula Center and received the surgical treatment that would allow her back into her life and community without the humiliation she had previously endured. However, on her return home, her husband summoned her to bed, and even though Dr. Arrowsmith had warned her not to have sex for six months after surgery, Hadiza was left with no choice and had the fistula torn open. As a result she was again thrown from her home by her husband and returned to the fistula center with hope that this injury can be mended again. Hadiza vows not to return to her husband this time. This kind of story exemplifies the need for education, which Worldwide Fistula Fund sets high among its goals to not only offer surgery but to help prevent surgery from ever being needed.
Without the generosity of our donors none of the work Worldwide Fistula Fund do would be possible, and we would like to thank everyone for their continued support.
Click here to read Nicholas Kristof’s full op-ed!
One of the most devastating aspects of fistula for women is the social isolation that often comes with the injury, coupled with a loss of financial support from family. Often, we hear of women coping with this injury who have been sent away from their family, and who must suddenly find a way to support themselves removed from traditional support systems.
WFF is committed to providing “Whole Person Care,” to women suffering from a fistula injury. As Danja Fistula Center has become known as a “last chance” option for women with particularly complicated fistulas and women who have previously undergone multiple unsuccessful fistula repairs, this approach has particular significance. The more traumatic a woman’s experience, the more important it is to create a treatment plan that will address the myriad difficulties faced by women with fistula.
One of the programs at the Danja Fistula Center that reflects this commitment is the Reintegration Program. Women who are at Danja Fistula Center awaiting surgery, who are receiving follow-up care from fistula surgery, and women who have been deemed incurable, have the opportunity to join the Reintegration Program. In this program, women have the opportunity to attend classes in literacy and math, basic health and hygiene, and appropriate-scale basic business that will be utilized for income-generation, protection of health and advancement of her well-being. For women who remain at Danja Fistula Center for longer, the opportunity exists for them to join the vocational skills class, which teaches sewing, knitting, embroidery and soap making, with follow-ups after the women return home. Women who graduate from the vocational skills class are supplied with a “starter kit” of supplies to help her establish a means of support for herself and her family following her return to her home community.
WFF is very pleased to join in celebrating the graduation of the first class of women from the Reintegration Program on Wednesday, June 19, 2013. We continue to be amazed at the strength and determination of these women, and celebrate their new success!
Spring, with its promise of renewal, is not only a good time to appreciate the ways in which Worldwide Fistula Foundation (WFF) works to help women suffering from fistula, but also a time to celebrate the women who have suffered and can now return home fistula free. At the Danja Fistula Center in Niger, we are working hard to give as many women as we can the celebration of spring and rebirth, because this is a duty we must give every woman regardless of wealth, race or social standing. Our goal is not only to repair a fistula but to restore a woman’s spirit when it has been cruelly taken from her.
The UNFPA has designated Thursday, May 23 as International Day to End Obstetric Fistula where the international community focuses on the eradication of fistula. WFF works toward this goal every day in programs and projects across Africa with a vision of a day where no family is forced to grapple with the effects of fistula, where no woman faces social isolation or shame from the effects of fistula, where every woman has access to preventative care regardless of how rural her village may be and where expectant mothers all enjoy safe pregnancies and deliveries. We walk toward this goal along with the UNFPA and all the partner organizations who work to make the world a safer and better world for mothers.
Earlier in May, WFF invited a second surgeon to work with our resident surgeon at the Danja Fistula Center in Niger to provide surgery to a number of women suffering from particularly complicated fistulas. For one week, these two dedicated surgeons worked together on surgical approaches and treatment strategies to these complicated cases and performed 32 complex fistula repair surgeries. That is 32 women who before held no hope and who now can return to their families as mothers, daughters, sisters and aunts without the stigmatism of having a fistula attached to them. The hole is not only repaired in their body but also in their lives.
There is hope. There is motivation. There are those of us who are fighting to help. The following video is a celebration of the joy and happiness that can be brought to a woman by repairing her fistula and breathing new life into her. This was taken at WFF’s Danja Fistula Center in Niger. Join WFF and the international community in the inaugural International Day to End Obstetric Fistula and help us give more women a chance to return home without having to be embarrassed or worrying about an injury they did nothing to cause. Help us end fistula and celebrate the rebirth of a woman’s life.
Dress Ceremony at Danja Fistula Center in Niger
As always, your support is cherished and needed. Thank you for helping Worldwide Fistula Foundation.
The most obvious work we do at the Danja Fistula Center is to offer free and life-changing surgeries to women suffering from obstetric fistula. But our work extends far beyond the transformations that begin inside our operating rooms. We have five pillars of care — some of which we’ve written about before — and those include surgical care, training, fistula prevention, research, and social reintegration.
We’ve expanded our social reintegration program in recent months with the generous support of LUSH Cosmetics, and we’re about to be featured in the company’s latest issue of Lush Times. We’re thrilled about this, because soon nearly a million copies of the Lush Times will be available in Lush stores all over the world — an incredible opportunity to spread awareness and build support for obstetric fistula programs.
Our social reintegration program helps our patients rebuild their lives after we’ve taken care of their medical needs. For the women we serve, social reintegration is often crucial to their continued happiness after fistula surgery, especially since many of these women have been shunned by their communities because of fistula.
Our social reintegration initiatives include vocational training, entrepreneurial guidance, and literacy development, which is significant in a region with a 10% literacy rate. These programs range from two weeks to eight months in length and are shaped based on the needs of particular patients. We look forward to sharing stories of our reintegration successes in the months ahead.
If you live near a Lush store, visit soon and pick up a copy of Lush Times and, even better, buy one of their Charity Pot hand and body lotions; 100% of the price goes to organizations like ours.
If you’d like to support the work we do directly, click on over to this lovely page.
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