Going the miles for the dignity of women

In the true sense of the word, Barbara Margolies comes out as a firm woman. There is an unmistakable element of seriousness about her. But all that is when you are giving out a first-time impression of her. Yes, until you have talked about the thing that she seems to be most endeared to today. You only have to ask her about obstetric fistula and the activities of the International Organisation for Women in Development (IOWD). The real Barbara will spring up like a bird chirping in the breezy break of the day sun, exuding the sort of liveliness that her all-grey afro-like plume of hair camouflages about her persona. She just wouldn’t easily stop talking about fistula, the women affected by the condition and her organisation. But first things first. Obstetric fistula is a severe medical condition in women when the wall between the bladder and vagina is damaged and a fistula or hole develops. This means the woman constantly leaks urine and sometimes, if the rectal wall is affected, the ability to control faecal excretion is also lost. One of the major causes of Obstetric Fistula is prolonged obstructed labour, meaning if a woman stays in labour pains for longer than 24 hours, then she risks suffering from the dreaded fistula. Obstetric fistula leads to stigma and rejection from community down to families, as women with the condition find themselves abandoned by husbands, rejected by relatives and forced out of communities. They are accused of smelling. They cannot find jobs or socialise with people. But the condition can be fixed courtesy of a simple surgery or, in severe cases, attended to in other ways such as by fixing ostomy bags – through which urine can flow – or waterproof underwears. Barbara Margolies From how animatedly Barbara talks about fistula, one would be forgiven for assuming she is an obstetric surgeon specialising in fistula repair. Wide off the mark. Apparently, the idea that she could attend a fistula surgery in a theatre is some distant dream to wake up from the instant it starts. She cringed with revulsion, her palms on the sides of her face, the face all contorted… all because of the question, “have you also attended a fistula surgery?” Well, understandable, especially if you consider what the surgeons jokingly call themselves—that they are animals who exude the most of their instincts inside the theatre when cutting flesh, bones and seeing blood of fellow humans elicits no emotion from them. Barbara prefers to share in the pain of fistula victims, comfort and reassure them from the outside. This, she does by travelling thousands of miles from the US to Rwanda, three times a year with her organisation to volunteer in giving back dignity and smiles to women who have these during childbirth. It all started in 2003. Three years before then, the US State Department had hired the English teacher’s services to be of benefit to Mali. She had previously fallen in love with Africa during trips, two decades earlier, to Tanzania where she was researching for her children’s book project. The offer to Niger, therefore, was a dream move back to Africa, and with it, her fascination with obstetric fistula. While visiting the national hospital of the West African state in 2003, Barbara saw firsthand a situation that touched her tender nerves. Here were women who were reeking from incontinence—involuntary urination or defecation—because of the dreaded condition. “I saw 80 women leaking, living in the courtyard and it was horrible. I wondered how women lived like that, leaking all the time. It was unbelievable. Then I asked myself, ‘how could I not do something as a woman?’” Barbra says. She then got in touch with pelvic reconstructive surgeons, and, together with her husband, Ira, they started the organisation that the 75-year-old runs as the executive director. Barbara and her husband Ira, a retired executive for a Manhattan garment centre manufacturer, have visited African countries dozens of times. She was in Niger for nearly eight years, before an invitation from the Ministry of Health enticed her to consider Rwanda as another stop for IOWD activities. In 2010, they set up camp and there has been no looking back. “It has been a remarkable experience working in Rwanda, and we are very grateful for the opportunity to bring our fistula programme to Kibagabaga Hospital. The cooperation and dedication of the Kibagabaga staff to learn all about fistula surgery and post-operative care has been extraordinary,” Barbara says, beaming. The retired English teacher-cum-photographer attributes her spirit to the overwhelming support from her family and friends. “I managed to do all this because I had a very supportive husband. Besides, I am a very independent woman; very outspoken and I speak my mind. And if I believe in something, I go for it,” she says. Such a summation of what drives her appears in stark contrast with her husband, a symbol of support around her. Ira, an introvert by the look of it, wears a trademark grin but talks less. “We love it here, we love being here, we love Kibagabaga. The nurses here are wonderful. Rwanda is an extra-ordinary country, the midwives and nurses care about the fistula women, they care about us and we care about them, it’s very special. It is like being home,” Barbara says, chuckling. Passion for charity Barbara leaves no chances in running around to secure volunteer surgeons and medical students as well as supplies and equipment for IOWD outreach programmes to the country. Seeing the lives of women change after their fix drives her to think of more ways to continue with the charity. “I am just a grandma, just a lady who raised a family. I am not a rich person, nor am I special, but this is very important to my life,” she says. “I have been very lucky, doctors are willing to come and they pay their own way. They are also compassionate and they feel for the women, it’s perfect we are like a family.” Dropping back into an assumed first person singular, she takes one through the experience of the fistula victims as though it was something she had herself experienced. She likes speaking of it that way. The ‘we’ syllable. The situation of these women, she says, doesn’t only affect them physically, it also affects them mentally and emotionally, because most of them are abandoned by their husbands, children and sometimes their mothers. “We all need someone to hug us, to kiss us but these people are lonely, no one can interact with them. The emotional life that they have lost is just unbelievable,” Barbara says. And, dropping back into the stern persona you would see in her face at first glance, she reveals more about the doctors IOWD brings for the voluntary activities, saying the treatment given to the women is special and is done by professional doctors. The medical team includes urogynecologist (an obstetrician/gynecologist who specialises in the care of women with pelvic floor dysfunction), obstetric surgeons, and anaesthetic nurses. “I won’t take any doctors unless they are recommended and only those who are highly trained,” she says, almost acerbically. “No one is to operate on these women unless they are trained for this.” Support from government The ministry knows and they are trying to fix this through education, we made a beautiful film to show how the C-section is done. If more young doctors see the film, they will know how to do a proper c section and for the older doctors who might be doing something wrong, could change and we will be able to curb the one cause of fistula. We are doing the operations with the Rwandan doctors so that they also learn. The government really is very supportive, feed the patients, put up tents for them, the surgeries are free, provide for them transportation from their homes to the hospital. So we are very grateful and it’s fantastic because they can’t afford it. Different support rendered We do education; we teach, we talk to the women, we consult with them, tell them what this is about, we explain what is going to happen after the operation simply not in medical terms and about their recovery. When we come back for the next mission we do a follow up. In Rwanda, a country of 11 million people, we do not have updated statistics as to how many fistula women exist, but all women who are suffering from this horrible condition are welcome to Kibagabaga Hospital for help. IOWD travels to Rwanda three times a year to examine and perform surgeries on as many women as time allows. Radio announcements are aired throughout the entire country and the women come.