Mabinti Centre, where Tanzania's fistula survivors mend their lives

At their home in Mbagala, Tanzania, Faith Carlos and her family wake up daily to the hum of a radio perched on the cupboard's top shelf.

Years of mornings have begun this way. As she rises to do her tasks, she tunes in to her favourite programs and often hums along to the gospel songs interspersed between the talk shows.

On this day in 2006, which she describes as if it were yesterday, an advert on the radio snagged something deep within her. It spoke of a medical condition, its symptoms mirroring what had been happening to her for months. The announcer had also offered a route for free treatment.

In the days leading up to this, the question about her medical condition had become a persistent shadow. It slithered into casual conversations, loomed over the counter at the local pharmacy, and lingered in the quiet of her nights.

It was urgent and unspeakable: "Why was her stool leaking?"

Then, a glimmer of hope. "When I heard the announcement over the radio," she begins, her voice still laced with a hint of apprehension, "I felt a cold dread in my gut. I quickly rehashed what I had heard to my husband. For the first time, I felt like someone could finally offer me a lasting solution," she says.

Faith's first pregnancy, two years into her marriage, was eventful. The fatigue and nausea so often mentioned by mothers and what she would later experience with her other two pregnancies were absent.

"I only experienced slight aversions to some foods. I was very happy and looking forward to motherhood. I was 26 years old then," she offers. She recently turned 39.

This joy, however, gave way to a gruelling labour. A deep frown creases Faith's brow as she relives the ordeal — the agonising wait for proper care, relentless pain, and the overwhelming sense of being unprepared for the intensity of it all.

***

We are sitting at a showroom, and every corner reveals a new treasure of handcrafted items. There are bags, whimsical toys, and pillowcases in a symphony of colours and textures. Faith, alongside other women, makes them.

Sunlight streams through the windows, casting a warm glow on Faith as she sits, her fingers nimbly weaving a length of black thread. Pausing for a moment, she continues with her story, revealing that she could not talk about it for a long time.

“The maternity ward was crowded,” she says. “There were no available beds, so I spread my leso on the floor and lay down. At one point, I shouted that the baby was coming, and a kind stranger who sat on the edge of my bed stepped down, offering me the bed to lay on. The nurse in charge instructed me not to push the baby out and asked that I clench my muscles as she was still attending to another expecting mother. When she later came by my bedside and asked me to push, I couldn't. My strength had dissolved," she remarks.

“The nurse and her team piled onto my chest, but the baby wasn't coming out,” she offers.

The specialists did an episiotomy on her, a surgical incision in the perineum during childbirth to widen the opening for the baby, and she delivered a baby girl.

Foul smell

Then, something happened. "During my visit to the toilet, I noticed a disturbing change. Stool, intended to leave through the rectum, was somehow finding its way out through my birth canal and getting mixed up with the vaginal discharge, and leaving behind an odd and foul smell," she offers.

"In some childbirth injuries, a tear forms between the birth canal and the rectum. This creates an abnormal connection, called an obstetric fistula,” explains Dr Brenda Msangi, CEO of Comprehensive Community Based Rehabilitation (CCBRT) a non-governmental organisation providing specialised healthcare services in Dar es Salaam, Tanzania.

“This condition leads to uncontrollable urinary continence or leakage of faecal matter.”

Faith initially used diapers, but due to the high cost and the number of times she had to change them, she resorted to makeshift solutions, such as using her old clothes. Sadly, seeking treatment at a local hospital presented another hurdle.

“The surgery cost at least Ksh400,000, an insurmountable amount for Faith and her family,” she explains.

At the recently concluded Women Lift conference in Dar Es Salaam, Tanzania, Dr Idyoro Ojukwu, a resident Obstetrician and Gynaecologist at the Mater Misercordiae Hospital in Nairobi, painted a stark picture of the challenges women face during childbirth in the region.

As part of a broader discussion on emerging health challenges, her presentation highlighted a specific concern: ensuring access to quality care for all mothers during delivery. This issue, Dr Ojukwu argued, significantly impacts the physical and emotional well-being of mothers and new-borns.

“Some women die on their way to health facilities during labour, while others die in health facilities due to inadequate care. The loss of unborn babies and the development of fistulas are also common outcomes for women who survive labour complications," she explained.

Data from the World Health Organisation (WHO) shows that the majority of women with fistula are based in Africa. Each year, WHO reveals that 50,000 to 100,000 women are affected by obstetric fistula, and two million women live with it. Ninety per cent of all cases end in a stillbirth.

In 2018, the United Nations member states committed to eradicating fistula by 2030. This ambition, however, faces significant hurdles. While the United Nations Population Fund (UNFPA) reports that more than 138,000 fistula repairs have been performed, an estimated 500,000 women and girls still require treatment. Additionally, new cases continue to occur every year.

Several factors are impeding the progress towards ending fistula. One major obstacle is the stagnation in maternal mortality reduction efforts. Furthermore, there is a global shortfall of skilled healthcare workers, particularly those specialising in sexual and reproductive health (SRH).

Gender-based violence

Various crises further compound the situation. Climate change, pandemics, humanitarian emergencies, and conflicts disrupt access to essential healthcare services.

“On top of these challenges, gender-based violence and persistent gender inequality continue to disadvantage women and girls. This creates an environment where they are more vulnerable to fistula and often lack the resources or power to seek proper treatment. Ultimately, the burden of these challenges falls disproportionately on women and girls, pushing many towards poverty, illness, and powerlessness,” said Anita Zaidi, president of the Bill and Melinda Gates Foundation's Gender Equality Division, who spoke at the conference.

Obstetric fistula casts a long shadow across East Africa. In Tanzania alone, more than 21,400 women endure the physical and social isolation caused by untreated fistula, with an additional 2,500 to 3,000 new cases emerging each year.

Uganda, despite conducting more than 1,500 fistula repair surgeries in 2022, data from the Ministry of Health shows that it struggled with a backlog of more than 75,000 women desperately awaiting treatment.

Further, a 2019 Aga Khan University study conducted in Tanzania and Uganda revealed that more than half the women with fistula waited more than a year before seeking help and attributed fear, stigma surrounding the condition, and lack of awareness about treatment options.

Maternal mortality

Kenya faces a similar challenge, with an estimated 1,000 new cases annually, but only 60 per cent of women receive the care they need.

There are different types of fistulae. With obstetric fistula, which primarily affects women who have had childbirth complications, is the most common and directly linked to being one the major causes of maternal mortality.

During childbirth, Dr Brenda explains, powerful uterine contractions orchestrate a rhythmic descent of the baby's head through the pelvis. When labour becomes prolonged, the insistent pressure of the foetal head against the mother's pelvic bones compresses the surrounding soft tissues, thus restricting blood flow to these vulnerable tissues. Blood, rich in oxygen and nutrients, is essential for cellular survival.

"When the restriction persists, deprived tissues begin to die. Over time, these necrotic areas can erode, leaving behind abnormal connections or fistulae between the vagina and either the bladder or rectum. These fistulae disrupt the body's natural elimination pathways, and if untreated, they lead to uncontrollable leakage of urine or stool, or potentially both," she offered.

Centre for training

Across the showroom, the rhythmic thrum of sewing machines vibrated through the air. Inside, a hive of activities buzzed. Women, brows furrowed in concentration, hunched over their machines. Others were busily cutting pieces, and the final duo whisked finished garments away, stacking them neatly in a waiting box. They were working hard to fulfil multiple orders — one from an airline and another from a fashion company that was due in a week.

These routines are sometimes broken by a short session of yoga classes led by one of them. Other times, it's a story.

Strangers at first. One reality. One mission.

This group of women have all suffered fistula at one point in their lives. The stories they tell here are woven from threads of pain, shame, societal scorn and rebuilding.

“When a new member joins, we know, we surely know, that she is a part of us. We talk to one another about what we went through because shame dies in exposure,” says Lilian Mlela, assistant team lead at the centre. "We carry the weight of our experiences, but they don't define us. Look closer."

The Mabinti Centre is located at the rear end of CCBRT.

“The consequences of fistula are life-shattering. You hear stories of women being abandoned and rejected by their communities. So, we thought of a training programme to empower them, rebuild their self-esteem and heal together," offers Brenda Masinga.

The women are trained in technical skills such as screen-printing, sewing, batik, beading and crochet for four months. While some are absorbed by the centre, others are supplied with a business starter kit containing a sewing machine, scissors, fabric supply, and a calculator.

Break barriers

"When we started offering fistula services in 2005, we were doing about 40 surgeries a year. But then, when you hear WHO statistics, we are talking about 2,500 to 3,000 new cases every year in sub-Saharan African countries.

So, then we were puzzled. We were like, okay, where are these women? We did a survey and two things came up; awareness and cost," she says.

For those without resources, it meant that they couldn't access the surgery or pay for their transport to the facility.

“We decided if we want to make sure that we're changing these women's lives, we need to break those barriers. So far, we have trained more than 500 ambassadors across the country. They call us through our dedicated call centre whenever they come across such women. We facilitate transportation and their stay here. Treating one woman costs at least Ksh200,000," she said.

***

Lilian wanted to have a third child — she hoped for a girl, and in June 2013, she delivered the last of her three children and called her Gloria.

Throughout her pregnancies and even before her marriage, fistula was unbeknownst to her.

"When it happened to me, I couldn't fathom what was wrong with me. Some said that I was bewitched, while some quarters said that I had had some unusual sexual activity. It broke me," she offers.

The odour emanating from her body and the stigma forced her into seclusion.

"At one point, I gave up, went back to my mother's house and told my husband that I wanted a divorce. Surely, I'd ask him what benefit am I to you?"

Love held up

On the day that she went to the hospital, her only concern was whether she would get better. She had been in pursuit of treatment before, twice, when the wound was still fresh, but the problem persisted.

"On one of the previous visits to the local health facility, I couldn't even sit properly in the car. The pain was so bad, I could only hunch over the hood of the car like a cow," she shares.

After a three-week stay in the hospital, she was released back home. A few months later, she was healed and returned to menial jobs to support her husband, who then worked as a driver.

"I didn't have a stable source of income, so when the facility offered me a chance to learn sewing, I jumped at the opportunity. I learnt to sew and even make sales," she remarks.

Like every woman at the Mabinti Centre, her tides have changed. "I feel at home here, and what's more, I earn a good salary that enables me to offer my children a better life," she says.

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