Vivian Nandi, survivor and tailor
Vivian Nandi developed obstetric fistula during the birth of the youngest of her five children. She credits her husband Mussa, her Christian faith, and her support network for giving her the strength to recover. But it’s clear that she’s a pretty extraordinary woman in her own right.
"I knew there was a disease called fistula - but I didn’t really know what it looked like," Vivian remembers. "When I had the symptoms, I didn’t have this possibility in mind. I knew fistula was associated with childbirth, but I didn’t understand the magnitude of it."
Vivian is one of 51 women in Mwanza Region, Tanzania, to have benefited from Amref Health Africa’s fistula programme. Working with local partners, we provide repair surgery and ongoing psychosocial support. Through training and seed funding, we also support women to set up small businesses. This comprehensive approach is important because many women who develop fistula are abandoned by their partners and / or families, leaving them without practical, financial, and emotional support. In this respect, Vivian’s story is an unusual one.
"I consider myself lucky"
"Most of my friends from the support group have been left by their husbands as soon as they became ill," says Vivian. "When I started having the symptoms I was just crying, not knowing what to do. I was in a desperate situation, but Mussa was there for me, supporting me and giving me courage that we would get past this."
Vivian’s diagnosis was relatively rapid, and she was able to have the repair surgery without too much of a wait. "I was fortunate because the operation worked first time,* and I recovered pretty well," she says. "I haven’t had any problems since."
Left: Vivian proudly shows off one of the dresses she has made. She's just starting out as a tailor, and for the moment she’s honing her craft by making clothes for her own children.
A very difficult time
"It was a very difficult time for our family," admits Mussa. "First of all, seeing what was going on with my wife and not knowing what to do. Sharing a bed with her. She was constantly depressed, she was crying all the time. And sometimes I was confused myself about what I could really do to help. It even affected our level of involvement in economic activities: Vivian couldn’t work, and I had to stop doing some things myself so I could be there for her. And that can transform into a fall in the level of income within the family. We have five kids to take care of, so it was a really difficult time. But I thank God that we survived. And here we are today."
Both Vivian and Mussa are very active in their local church. "When I encountered this challenge, my husband was the first person who came out in a more transparent way," says Vivian. "He reached out to people in the church, he told them that we were facing this challenge in our family: 'My wife is experiencing such a thing, I don’t know for sure what it is, but if there is anyone who understands it and can help . . .' People came straight away to see me: they just turned up at our door. I was shocked to see so many people coming to me, comforting me! I lean into my husband for that courage. I really appreciate Mussa."
"People need to know fistula can be treated"
The stigma that surrounds fistula prevents some women from seeking medical help. This can mean that they live with the condition for years or even decades.
"The challenge comes from the nature of the problem itself," explains Mussa. "The way the problem happens . . . it’s more of a private problem, it’s not openly talked about. More awareness of medical services should be given to the community. People should understand that diseases can be treated, and that diseases can be treated only in health facilities, rather than starting gambling with their own health by going to traditional healers, for example. A traditional healer paid us a visit, trying to give us assistance, but we said no: we believe this thing can only be cured in the hospital."
Reaching out
Today, Vivian and Mussa are working through the church to reach out to other women who might be living with fistula. "Apart from the friends in my support group, I speak a lot in church about my experience," says Vivian. "Somebody commented that they knew a lady who had similar symptoms and signs. I put them in touch with MAPERECE** and they went to visit this lady. It turned out that it wasn’t fistula, it was something else - but she got treated for the condition. We were glad that she went to the hospital and that the doctors were able to help her."
Vivian is not alone in her efforts to raise awareness. Mussa is a tailor by profession - but he’s also a street preacher. "I use the same platform to talk about fistula," he says. "I am giving my testimony: this thing is not just a thing that you hear about on the radio; it’s really happening to some people. It has happened in my home. I give a positive testimony: I tell people, at least it can be cured. I advocate for people to reach out for medical services."
Vivian continues: "I strongly believe in God, and I believe God can help us through other people. We won’t even know where they come from, we just see them coming. I think that sometimes these people come [into your life] because of that. And they’re thinking, 'There are some people who might be facing these challenges. How do we help them, how do we reach out to them?' That’s where I get my strength from."
All images (c) Sam Vox for Amref Health Africa, 2018
"I want these women to know that there are people out there who care"
Scholastica Daudi is also a survivor of fistula, now working to end stigma in her community in Simiyu Region. She is passionate about ensuring other women don't have to endure what she did.