How an NGO is restoring dignity for fistula patients

On the outskirts of Kabuga lies the home of a gracious woman whose life was once shattered and for twelve years led a life full of pain, shame and fear. Once a healthy and confident woman, Leonille Mutsindakazi had withered and lost all dignity to this horrible condition that confronted her just a few years into her marriage. In 1997, when she was having her second child, Mutsindakazi went into prolonged labour and having gave birth to a baby who was almost 4 kilos, the young woman, who was not more than 45kg was left with a fistula, a condition that would forever change her life. Stench followed wherever she went, friends and family turned their backs on her and for a second she couldn’t seem to understand how her world had evolved and turned her into an outcast. She was leaking and the inability to do anything just so she could save her dignity made life even worse living for her. “I was a healthy woman before all that happened, when I had my second baby I got damaged. I sought for treatment but it was all in vain. I started living a life of solitude, I always hid away from my friends. When I visited someone I always made sure that by the time I got up to leave, there was no one around me or at least no man around because my clothes were always wet accompanied with a filthy smell. That’s the life I led, I lived with fistula for twelve years and it was rough,” Mutsindakazi narrates. Being a strong and prayerful woman, she never gave up hope and indeed God answered her prayers in 2011 when she met IWOD team in Kibagabaga. International Organisation for Women and Development (IOWD) is a non-government organisation that offers free surgery to repair women with obstetric fistula. They also offer free medical care to women with gynecologic problems; free pediatric general care, pediatric urological surgery and pediatric general surgery. She thanks the IOWD team for having taken care of her, she also thanks the government for allowing such people to render its citizens such services. “I received treatment from Kibagabaga, and I am now a healthy woman. I am truly grateful.” She also thanks her husband because, amidst all that she went through, her husband never left her side. “I thank my husband for being by my side while I went through the darkest part of my life. He had all that rights to divorce me and marry someone else but he didn’t, we have been together for twenty four years. I thank him for his patience and thank God who helped us get through this.” Alphonse Rudarusha, Mutsindakazi’s husband, says that with all that happened, it could have happened that he lost patience but there was a reason he stayed. “My wife was fine when I married her, I understood that this was a problem she got giving birth and it wasn’t her fault. It wasn’t easy but what kept us strong were prayers and the love we held for each other,” Rudarusha recalls. He says that even though family and friends tried to separate them encouraging him to marry someone else, he gave them a deaf ear and stood strong reminding himself that this was the woman he loved and with whom he took vows. “We went together at Kibagabaga, I was with her at the hospital till she was discharged. And even in those 12 years of her agony, we went through everything together because she is the woman I took vows with. I can’t thank enough the good work done by IOWD for saving my wife.” An obstetric fistula is a hole between the vagina and rectum or bladder that is commonly caused by prolonged obstructed labor, leaving a woman incontinent of urine or feces. However, at times, though cases are rare, one can be born with the condition. 20-year-old Genevieve Niyonshima was unfortunate to be born with this condition. She had an ectopic ureter, the kidney that usually implants into the bladder instead implanted into the urethra where she had no control of her continence. Niyonshima with her parents at their home in Kamonyi. / Courtesy She grew up to be this unhappy child and as others went on playing with their peers, she was home in isolation living in fear of being mocked for who she was. She felt like a disgrace to her family and society. Life was meaningless and she admits to having wanted to commit suicide at some point because she saw no reason in her living. “I was an unhappy child; attending school was another nightmare because my classmates didn’t make it any easier for me. I struggled and managed to finish primary school but when I reached high school the teasing got worse and I had to drop out, I just couldn’t take the humiliation anymore,” she narrates. Her parents had taken her to a number of hospitals to see if their child could be treated but all they got was sad news. They had to endure the agony of seeing their child grow up into this beautiful woman who knew nothing but a life of shame and fear. Josephine Mukampabuka, Genevieve’s mother says words can’t explain the pain brought by her daughter’s condition. Having lost all hope for treatment, Mukampabuka decided to raise her child the way she was. “She wouldn’t play with her friends because of the smell. She was always leaking and I was afraid she would at some point get dehydrated and die. I felt hopeless for not being able to help my child,” she says. Just like a number of fistula patients in Rwanda, Niyonshima’s life was saved thanks to the IOWD team. In 2016 Niyonshima received an operation that gave her dignity and hope for the future, she now wants to go back to school and wants to become a doctor to save lives just like how she was saved. “I was depressed, life held no meaning for me but I am now a happy woman. I can do whatever it is I want, go anywhere and with this I thank IWOD for saving my life,” she says. Her mother too is thankful for the team that saved her daughter’s life but also mostly grateful for having taken their time to do a follow up on how her life is fairing after the surgery. For so many years, Barbara Margolies has made trips to Rwanda. Tireless journeys just so she can take part in saving the lives of Rwandan women. Margolies trying on her gift from Mutsindakazi. / Courtesy Starting up her organisation in 2010, IWOD has saved lives of over 1000 women. Margolies says seeing the smiles of these women after healing makes it worth every minute of the efforts. “As a woman first and as a mother, I understand that pain. Having all the dignity stripped away and left with nothing but shame is a tough ordeal to live through. We come from a different countries, we live completely different lives but when we come together to help each other out we are really one,” she says. editorial@newtimes.co.rw

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How an NGO is restoring dignity for fistula patients