When Rahel Nardos was growing up in Addis Ababa, Ethiopia, her mother had her brother wait in line for a half a day so that an ill sibling could see a physician. Nardos was aware that the availability of medical care was an issue in her country, but notes that they lived in the country’s capital. She was unaware, however, of the extent of the scarcity of medical care for those in more remote areas.
Nardos learned about the devastating effects of the lack of care first-hand for those in remote areas of the country, especially for women giving birth, when she returned to Ethiopia to care for obstetric fistula patients after having earned her medical degree in the United States and completed her residency in obstetrics-gynecology.
“I became familiar with the terrible childbirth injuries that women in Ethiopia encounter, especially those in rural communities,” she explains. That work led to her involvement within the Worldwide Fistula Fund (WFF). She is now lead urogynecologist at Kaiser Permanente NW and director of global health for the department of OB-GYN at Oregon Health & Science University as well as a WFF board member. She will speak at the WFF’s second annual fundraiser, An Evening to Restore Dignity on May 18 at the Cava Room above Moe’s Cantina in Chicago. The event will feature live music, raffle drawings throughout the evening and authentic margaritas and Mexican cuisine, all to draw attention to International Day to End Fistula.
What is a fistula?
The United Nations Population Fund says an obstetric fistula is “one of the most serious and tragic childbirth injuries.”
It is an injury resulting from childbirth occurring in those who have prolonged, obstructed labor lasting two or more days. Prolonged pressure of the fetus compresses the mother’s soft tissue against her pelvic bones, cutting off blood supply and leaving the tissue separating the vagina and urinary tract or rectum destroyed or damaged, as WFF explains on their website. The resulting hole uncontrollably leaks urine or feces through her vagina.
The resulting incontinence leads to social isolation and depression as well as medical problems such as infections, kidney disorders and even death if left untreated.
The World Health Organization estimates that between 50,000 and 100,000 women each year develop an obstetric fistula, and that as many as 2 million women live with an untreated obstetric fistula in sub-Saharan Africa and Asia. Risk factors associated with fistulas include limited access to obstetric care and pregnancy in adolescents whose pelvis may be underdeveloped.
“These women often marry very young and have children young with median age for a woman first giving birth being 18, and they have on average between five and seven children,” explains Soja Orlowski, executive director of Worldwide Fistula Fund. She adds that literacy rates and life expectancy are both low. “In these cultures, a woman’s self-worth is often measured by her ability to bear children. When she suffers this devastating injury and no longer bears children, everything she believes her life should be is no longer possible. It’s devastating,” she explains, noting that many husbands leave and some women are shunned by their communities as a whole.
About 90 percent of pregnancies resulting in fistulas also result in still births, adding a layer of grief for the injured women.
“Women can be imprisoned by this condition,” says Nardos.
How is it treated?
Obstetric fistulas are very treatable, with surgery performed by a skilled surgeon trained in this area correcting the problem up to 85 percent of the time. Unfortunately, not all surgeons have the requisite skill, leading women to have multiple surgeries. WFF focuses on training doctors.
The surgery to repair a fistula costs just $450.
Following the surgery, physical therapy is often needed and WFF established a rehabilitation advisory council to incorporate physical therapy best practices into their recovery programs.
Orlowski says that the organization’s programs have seen rapid growth in the past two years. “The mission is to prevent and treat devastating childbirth injuries thereby restoring women’s health and dignity,” says Orlowski.
While fistulas are exceedingly rare in the United States, they can and do happen. One suburban Chicago woman, Shalise*, suffered from a fistula due to complications from another surgery.
The experience led her to begin volunteering with WFF. “My experience was traumatic, but throughout, I was able to identify on a very small scale with women worldwide who suffer with this condition for years/decades with no real hope of a cure.”
She knows first-hand how the surgery can alter a woman’s life. “The cost of a corrective surgery of just $450 seems like such a small amount by U.S. standards, yet has an absolutely priceless outcome — restored hope, healing and the chance for a better quality of life for a woman. I know the impact of healing personally, and that is what drives me to want the same opportunity for others,” Shalise explains.
She adds, “My heart breaks for women who suffer from fistulas and do not have the ability to receive the procedure to cure them and restore their quality of life. This is what motivates me to volunteer with the WFF.”
Reintegrating into society
The WFF focuses not only on physical rehabilitation, but also has programs to support women as they reintegrate into society following repair.
“Once you’ve gotten the surgery, the question becomes how can you move forward from there and become self-sufficient. We give women skills and training as well as connect them with other survivors because they need support networks,” says Orlowski. Basic literacy and vocational skills training are particularly needed.
Several instructors in the training programs at the WFF reintegration center are fistula survivors themselves. One woman who teaches sewing started her own business sewing school uniforms and employs other survivors. Another survivor is also a catering business owner who returns to the center to teach culinary skills.
WFF making a difference
The WFF is at work in three countries in Africa: Niger, Uganda and Ethiopia. It has trained 629 doctors and advocates and performed more than 1,400 surgeries. While encouraged by those numbers, Orlowski notes that the path to success varies a bit in each country and that WFF works to partner with local organizations and develop collaborations. “It takes time, and it’s not a one size fits all approach,” says Orlowski.
In each country, the goal is to build the capacity of local care providers as well as provide prevention education through the OB-GYN residency program in Ethiopia and by training fistula survivors to act as advocates once they return to their communities in Niger and Uganda.
“The biggest part that is wonderful for me is the focus on capacity building. When we leave, I know that the doctors can take care of patients. It used to be the case where we’d have to tell women, ‘Come back next year.’ That’s no longer the case,” says Nardos.
If you are unable to attend the Evening to Restore Dignity on May 18, you can still support the WFF by donating to the organization here.
Says Shalise, “With over a million women living with fistulas worldwide, there is so much more work to be done, so many lives that can be restored with health and hope — not just the women, but their families and communities can also be restored.”
*Shalise’s last name has been omitted for her medical privacy.