NAMORROI, Mozambique – In just one year, the life of 21-year-old Carleta Eugenio Francisco has transformed completely. Before, she was isolated in her community in Namarroi District, Mozambique, stigmatized for suffering from the effects of obstetric fistula – a hole in the birth canal caused by prolonged, obstructed labour.

But today, with treatment, she has reclaimed her confidence and her life. “I want to go continue my education to become a nurse in the future, to help save the lives of young pregnant women in my community,” she told UNFPA. See more

At a crowded waiting area outside the operation room at the Nampula Central Hospital in Northern Mozambique, women and girls waiting in line to be treated for obstetric fistula are accompanied by their husbands, brothers and fathers.

The scene of hopeful and concerned faces of the men accompanying their partners is a distinctive feature of the fistula treatment campaign led by the Mozambican Ministry of Health, with support from UNFPA, the United Nations Population Fund.

Although Mozambique has seen a decrease of almost two-thirds in maternal deaths since 1990, the absolute number of women dying during pregnancy and delivery is still one of the highest worldwide. More than 8 per cent of women of reproductive age have died from maternal-related causes in 2013.

Most of the women who survive prolonged labour and develop an obstetric fistula in Mozambique remain untreated, including 2,000 new cases reported annually. In 2013, 377 women received surgical treatment through the Campaign to End Fistula, supported by UNFPA and partners, as well as other organizations and institutions.

Care over abandonment

In many tales of obstetric fistula worldwide, men’s involvement only contributes to more suffering. Women and girls often face discrimination and isolation by their families and communities. Some are even abandoned by their loved ones due to the taboos and shame attached to this condition, the result of a prolonged and obstructed labour without prompt emergency medical intervention, such as Caesarean section.

However, there are hopeful signs in Nampula Province that men, families and communities are increasingly supporting women living with fistula: more and more men accompany their wives, girlfriends, sisters and daughters on the journey to the hospital. Abilio Inacio Penteria (36), a
Professor has been a source of care for Dolinda (25) since the day back in 2009 when she gave birth at home with the assistance of a traditional birth attendant.

“After grieving over our stillborn child, we went immediately to the nearest health facility. We knew this childbirth complication had a cure. As I always had, I stood by Dolinda’s side until the end of her fistula nightmare,” says Abilio

“Because of the support of my husband, I continued to live with the hope of a cure,” says Dolinda, with a smile.

In spite of Dolinda’s fistula condition, she and her husband went on with their lives while waiting for an opportunity to put an end to her fistula nightmare. In 2011, she delivered a healthy daughter, followed by twins early this year. All three babies were delivered at the hospital.

Dreams beyond obstetric fistula

The couple, each with one of their young twins in their arms, expresses excitement about returning home from the hospital. Dolinda, who interrupted her education in second year of high school, dreams of walking in her husband’s footsteps and becoming a professor. Abilio is aware of the role he can play in influencing fellow Mozambican men. “Men have a responsibility to make sure that women who suffer from obstetric fistula are taken to a health facility immediately to ensure its treatment,” he says.

- Helene Christensen
 

"I was scared and did not understand what was going on", says 28 year-old Basgul, a Family Health Action Group member in Sangan, one of the most remote villages in Daikundi Province.

Two years ago, she developed an obstetric fistula during the delivery of a stillborn baby that lasted three days. After a repair surgery at Malalai Maternity Hospital in Kabul she picked up her life again and now she uses her experience to give lifesaving advice on maternal health to other women in her community.

During her pregnancy, Basgul did not receive any antenatal care. She delivered at home guided by her female family members as the custom prescribes in her village. The labour was obstructed and she struggled for three days to give birth. "It was my sister who eventually took the baby out", she recalls.

Read more

Wau, South Sudan – It seemed like the cards were stacked against Regina Awol Deng. She was forced to leave school when she was 7 years old, and to marry when she was just a teenager. She found herself pregnant at 17. And when she developed life-threatening complications, she was far from the nearest hospital with no emergency transport.

“I was in pain for two days. On the first day there was lots of movement, but on the second day I noticed I could not feel the baby moving inside of me,” she said.

When she finally found a ride to the nearest hospital, it was too late. “When I arrived, they told me my baby was dead,” she said.

Her own life was in danger, as well. Her body was swollen, and she soon fell unconscious. The doctors performed a Caesarean section to save her, but when she woke up, she knew that something was wrong.        

Regina Awol Deng, 18, experienced an obstructed labour, a stillbirth and an obstetric fistula. After treatment, she says she wants to return to school. Photo: UNFPA South Sudan/Jaime Jacques

“I couldn’t control myself when I had to urinate,” she said. “When they removed the catheter, I felt urine coming out.”

The prolonged, obstructed labour had left her with an obstetric fistula – a hole in the vagina. This condition can leave women leaking urine or faeces, or both, and typically results in social isolation, depression and deepening poverty.

“Whenever I drink something, I feel pain, and I never know when the urine will come,” Ms. Deng, now 18, told UNFPA.

Long-awaited relief

In July, a group of international surgeons came to Wau for a month-long programme to bring relief to women like Ms. Deng. Part of the Campaign to End Fistula, the programme was run by the Government of South Sudan with support from UNFPA.

The campaign reached out to women over the radio and through UNFPA-supported clinics and midwives. Many women travelled great distances to reach treatment, some of them leaving their villages for the first time.

At the hospital, fistula survivors shared their experiences: All had faced stigma, isolation and depression.

"Wherever I sit, there is a smell all around me, and nobody wants to be around me,” said Hellena Lou Machar, 30, who had been living with fistula since her first pregnancy nine years ago. “My husband doesn’t like it. The smell is embarrassing and I have no control over it.”

When she learned about the programme, she was determined to take part. “I heard that they were fixing people with this problem, and I had to find my way here,” Ms. Machar said.

She and Ms. Deng were among 71 women and girls to receive reparative surgery. The eldest, Akon Kang Ngang, 76, had been living with fistula for nearly 60 years.

Finding long-term solutions

South Sudan has one of the world’s highest maternal mortality rates, and approximately 60,000 women and girls are thought to suffer from fistula. The country’s poor health infrastructure means many women lack access to emergency obstetric care. Child marriage and adolescent pregnancy are other factors.

“The problem here is that forced marriages result in early pregnancies,” said Dr. Said Ahmed, the chief surgeon of the campaign. Girls who are pregnant before their bodies are ready are much more likely to experience fistula."

But the measures required to prevent fistula are well known. Ending the practice of child marriage is critical, both to prevent fistula and to protect girls’ overall well-being. Access to emergency obstetric care – particularly timely access to facilities and health staff able to perform a Caesarean section – must be improved. And family planning programmes must also play a role, as these empower women to space births, helping to improve maternal health.

Empowering women through family planning

Yet family planning is not widely accepted in South Sudan . Many people believe women should have large families to replace the population lost during the country’s recent war.

Health workers in Wau provided family planning counselling to the fistula survivors who had come for treatment, encouraging them to make their own informed choices about future pregnancies. When women feared they would encounter resistance at home, staff offered to reach out on their behalf.

Ms. Deng knew family planning would help her pursue her goals. “I want to go back to school,” she said. “I want to wait two or three years before I get pregnant.”

At her request, health workers counselled her husband on family planning, as well.

The people in the hospital called my husband to talk to him about birth control, and he has agreed to let me use it.”

 -Jaime Jacques        

DHARAN, Nepal –Dhani Devi Mukhiya remembers the days when her relatives shunned her in public and her husband threatened to bring home another wife. For some of the villagers in her community in Nepal, the obstetric fistula that she lived with for seven years was ‘punishment for a sin’ she had committed in her ‘previous life’.  

In her village in Nepal, Pramila Chaurisiya advocates for women to receive treatment for obstetric fistula. Photo credit: UNFPA Nepal/Santosh Chhetri 

I became a soft target for my husband and neighbours at a time when I needed their support the most,” recalls Ms. Dhani Devi, a mother of four children living in eastern Nepal, approximately 660km from the capital city, Kathmandu. 

Obstetric fistula is a hole between the vagina and the bladder or rectum. The injury, which leads to incontinence, develops during complications in childbirth, such as prolonged labour without medical intervention. It occurs with higher frequency in adolescent pregnancies. Ms. Dhani Devi, now 29, had her first child when she was 17 years old.

Dhani Devi Mukhiya with her daughter. Ms. Dhani Devi was successfully treated for fistula after seven years. Photo credit: UNFPA Nepal/Anju Shrestha

Child marriage is common in the area, and two women in neighbouring villages went through a similar ordeal. All of them are uneducated, belong to poor families, and have limited access to maternal and family planning services.

A new chance

But the women were able to reclaim their lives after undergoing fistula surgeries through a programme supported by UNFPA, in the region’s only public state-of-the-art hospital to treat fistula, B.P. Koirala Institute of Health Sciences (BPKIHS).

Around 125km southeast of Ms. Dhani Devi’s village, Radhika Rai hopes she, too, will have a new chance at life. Now 20, she was married at age 12 and delivered a stillborn baby at 16, developing an obstetric fistula in the process.

She has just received treatment at the hospital’s ward in the picturesque district of Dharan, after attending a fistula-screening camp organized in the hospital. Radhika Rai recovers from fistula surgery. Photo credit: UNFPA Nepal/Santosh Chhetri

“I tell other married women of my VDC to go to Dharan if they suffer from incontinence from urine or stool,” says the 40 year old, who was married off at 15.

Ranjana Devi Mehata also underwent a successful surgery at BPKIHS and now speaks both for fistula survivors and against child marriage. “Ensuring access to family planning services is not always under our control, but women like me can at least try to convince villagers to delay the marriage of their daughters,” she says.

A 2011 assessment obstetric fistula in Nepal, conducted by the Government of Nepal, UNFPA and the local NGO WOREC, estimated that there are 200 to 400 new cases of obstetric fistula in Nepal each year, leading to some 4,300 cases.

Ranjana Devi Mehata speaks out against child marriage and advocates for fistula survivors. Photo credit: UNFPA Nepal/Santosh Chhetri

It is feared, however, that this is only the tip of the iceberg, as most cases are unreported due the stigma associated with the condition and lack of knowledge about treatment. Obstetric fistula was not officially recognized in Nepal until UNFPA’s Campaign to End Fistula was launched in 2010.

As part of the campaign, UNFPA works with the government and other stakeholders to support prevention and treatment by building the capacity of health institutions and service providers. BPKIHS has recently been designated an obstetric fistula training center.

- Santosh Chhetri

ABUJA, Nigeria – Since her marriage at age 14, Zuera Mustapha, now 21, has experienced two stillbirths and a recurrent obstetric fistula resulting from her difficult deliveries. Yet even with these hardships, she has been luckier than some; her mother and sister both died of complications in childbirth. In northern Nigeria, where she lives, fistula and maternal death are alarmingly common – a fact UNFPA is working to change. fistula after my first delivery. The child had died,” Ms. Mustapha said, simply, from her home area in Kano State.

A fistula rehabilitation centre in Kano, Nigeria. Photo credit: APANEWS 

Obstetric fistula is a hole between the birth canal and the bladder or rectum, or both, caused by prolonged labour without prompt medical intervention, such as a Caesarean section. Affected women suffer chronic incontinence, which can result in stigma and social isolation.

Ms. Mustapha received an operation to repair the problem at the Laure Fistula Centre, one of many centres supported by UNFPA in Kano, and she was instructed to have a hospital delivery during her next pregnancy. “The doctors asked me to return to the Murtala Hospital when I was in labour for a Caesarian section. But the labour started in the middle of the night, so I went to the hospital early the following morning,” she said. Despite receiving a C-section, the fistula recurred. The Federal Ministry of Health’s National Strategic Framework for the Elimination of Obstetric Fistula estimates that “approximately 20,000 new cases [occur] each year, although recent studies put estimates at approximately 12,000 new cases per year”. The country has a maternal death ratio of between 487 and 545 deaths per 100,000 live births, according to the strategy.A problem of adolescent pregnancy The problem is exacerbated by adolescent pregnancy. According to a recent United Nations report, “Researchers have found that girls who become pregnant before age 15 in low- and middle-income countries have double the risk of maternal death and obstetric fistula than older women.”

Adolescent pregnancy too often results from child marriage – which is not only a health hazard but a human rights violation as well. “A significant proportion of adolescent pregnancies result from non-consensual sex, and most take place in the context of early marriage,” the UN report says.

According to the 2008 Nigerian Demographic and Health Survey, “Almost half (46 per cent) of women aged 20-49 were married by age 18.”

Taking action

To address the high incidence of obstetric fistula and maternal death, health officials and policymakers must increase access to fistula treatment and promote interventions that can prevent fistula from occurring – routine antenatal care and delivery under the care of a skilled birth attendant such as a doctor, nurse or midwife. Officials must also work to prevent early marriage.

UNFPA provides funding to the Fistula Foundation Kano, which makes treatment of fistula more accessible in Kano and Katsina states; the treatment is usually provided at no cost. The organization supported the treatment of some 685 fistula patients in 2012 alone, and 201 patients were treated between January and September 2013.

Although the UNFPA project targets six local government areas in Kano and Katsina states in northwestern Nigeria, women from other communities have also taken advantage of the facilities.

“We have 60 trained community mobilizers, who go from house to house, educating women on birth preparedness, antenatal care and hospital delivery,” said Musa Isah, the Director of the Fistula Foundation.

“We also now educate men on how best they can support their wives when it comes to pregnancy and child birth, and at the same time encourage delivery in hospitals,” he added.

A ‘Fistula Ambassadors’ programme is also enlisting women to advocate for hospital deliveries, raise awareness of the dangers of early marriage, and inform women and families about the availability of free fistula treatment.

With support from the Federal Ministry of Health, UNFPA has also carried out maternal health programmes in other parts of Nigeria, including in Ebonyi, Abia and Akwa Ibom states. These programmes address obstetric fistula, as well as other issues, such as emergency obstetric care, family planning, early detection of breast and cervical cancers, and girls’ education.

Dr. Marchesini, originally from Italy, learned to treat obstetric fistula in 1973, while training at a hospital in Uganda. He knew immediately that he would devote his life to the cause.

The following year, 1974, I went to Mozambique and I began to operate on every woman appearing in my hospital,” Dr. Marchesini said. Those who arrived for treatment were “suffering and rejected women,” he explained.

His work took him all over the country, to hospitals in Quelimane, Mocuba, Tete and Songo. For years, he was the only doctor in Mozambique treating the condition.

Father Aldo Marchesini operates on a fistula patient in Gurue, Mozambique. Photo: UNFPA Mozambique, 2014.

He stayed through the country’s long post-independence civil war, during which he was kidnapped and imprisoned a number of times. But his chief complaint was that women – who had already faced enormous challenges accessing health care – had an even harder time seeking treatment.

“During the civil war, it was very difficult to travel by car or bus. The number of (fistula patients) in our hospital diminished because only patients near Quelimane were able to come to the hospital,” he said. Instead, he went to them. “I was able to go to some provinces for campaigns of two to three weeks by flights with small aircrafts,” he said

Dr. Marchesini has personally operated on more than 1,000 women as a chief surgeon, and as a teacher, he has overseen the treatment of many hundreds of others. But his most lasting contribution will be through the skills he imparts to local healthcare providers. By some estimates, all the physicians in Mozambique now treating obstetric fistula received their training from him.

Established by the General Assembly in 1981, the UN Population Award is presented each year to a laureate or laureates who have made outstanding contributions in the fields of population and health.

The award committee is chaired by the Czech Republic Ambassador to the UN, Edita Hrdá, and consists of representatives of Bangladesh, Côte d’Ivoire, Denmark, Grenada, Jamaica, Qatar, the United Republic of Tanzania, Nigeria and Pakistan. Members of the committee also include UN Secretary-General Ban Ki-moon and UNFPA Executive Director Dr. Babatunde Osotimehin.

The awards were presented by Deputy Secretary-General of the UN Jan Eliasson at a ceremony at UN Headquarters.

"The Population Award is an expression of our joint commitment to ensure a life of dignity for all and to build a world in which every pregnancy is wanted, every childbirth is safe, and every young person’s potential is fulfilled," said Mr. Eliasson, adding: "The commitment of Father Marchesini embody these goals."

Read the original article.

A project in Tanzania is using cell phones to help women with fistula. "Mobile technology will be a game-changer in terms of health," says UNFPA Executive Director, Dr. Osotimehin.

I was 15 years old when I got married, and my husband was 22. My sister-in-law saw me at one of my relative’s wedding and made all the arrangements for her brother to have me,” Sharifa recalls. Forty years later, she describes this as the start of a life derailed by obstetric fistula. Today, Sharifa looks fragile in the way she moves, sits and talks.  She is anything but.                    

Sharifa (left) at the Malalai Maternity Hospital talking to the doctor that treated her fistula, Dr. Pashtoon Kohistani. Photo credit: Zainab Hiadary/UNFPA Afghanistan - Sharifa (left) at the Malalai Maternity Hospital talking to the doctor that treated her fistula, Dr. Pashtoon Kohistani. (Photo: Zainab Hiadary/UNFPA Afghanistan.

"I delivered my first baby girl 11 months after my wedding, and five years later I had my second daughter,” says Sharifa. “I delivered four more children, but all of them were dead. I still don’t know why. I developed an obstetric fistula delivering the last one."

She does not remember how long she was in labour because she lost consciousness. What she remembers is that after giving birth to her sixth stillborn child, a new nightmare began and lasted 20 years.

“I couldn’t go anywhere,” she says. “There were no Pampers [diapers] before, so I had to use clothes, and I couldn’t visit any relatives or work.

Segregated from family and society

The isolation that Sharifa suffered is just one of the consequences of living with an obstetric fistula, a hole between the vagina and bladder or rectum, usually caused by prolonged labour without treatment. Fistula leaves women leaking urine or faeces, or both, and typically results in social isolation and depression.

Sharifa’s situation is typical of the majority of women suffering from obstetric fistula in Afghanistan. According to a 2011 report conducted by UNFPA, 25 per cent of women living with the condition were younger than 16 when they married. The study, conducted in six provinces, found four cases for every 1,000 women of reproductive age who is or had ever been married.

Afghanistan has one of the highest maternal death rates in the world. The three major killers are hemorrhage, pregnancy-induced hypertension and obstructed labour. Many women who survive childbirth subsequently suffer from injuries such as obstetric fistula.

Sharifa looked for treatment, and received two surgeries, but these proved unsuccessful. Her husband and in-laws decided that he should take a second wife.

“My husband married a second time because I had this problem. No one wanted to eat anything from my hands, so I started to look for a new wife for him,” says Sharifa. “I was the one who introduced her to him".

After her husband married his second wife, Sharifa was left alone to resolve her situation. Eventually, she learned about Malalai Maternity Hospital, in Kabul, the only public health facility in the country that treats obstetric fistula.

When I heard about the programme at Malalai Maternity Hospital, he didn’t want to support me. I had already had two surgeries, so he didn’t think they will cure me.” After asking for her sister’s help, and with financial support from her neighbours and an adopted son, she travelled to Kabul to get her third surgery.

“It’s been four years now since I got my life back,” she says. “Now I can visit my relatives and work.”

A lifeline for fistula patients 

Sharifa was treated at the hospital’s obstetric fistula programme, which is funded by UNFPA. She stayed there for 21 days and was one of the first patients treated at the Fistula Ward, where about 100 women now receive surgery every year.

Sharifa's life is forever changed. After suffering from an obstetric fistula for 20 years, she underwent a successful surgery at the Malalai Maternity Hospital in Kabul. Photo credit: Zainab Hiadary/UNFPA Afghanistan

"In 2007, the obstetric fistula programme moved from a treatment-based care approach to one that promotes the prevention of obstetric fistula, its treatment and the reintegration of patients,” explains Mohammad Tahir Ghaznavi, the UNFPA officer in charge of the programme for Afghanistan.

“Through our programme, midwives and obstetricians are trained to prevent, diagnose and refer obstetric fistula patients, and the obstetrician and gynecologist surgeons at Malalai Maternity Hospital are specifically trained to treat them.” 

Some of the medical staff at the hospital have also witnessed their share of inoperable cases, or situations in which women with children were abandoned by their families.

Sharifa was lucky enough to have the support of her neighbours, her sister and her adopted son. “Even when she was sick, she was taking care of us,” says her son, Sayed Ahmad, who accompanied her to the hospital. “She is fine now, and we are very happy for her.”

Reported by Maria Blanco Lora

Obstetric fistula entered my life when I was 12 years old.

It was my final year in primary school, and I was embarking on a study of my West African roots when I came upon a story in the Wall Street Journal about a young Tuareg girl in Niger named Anafghat Ayouba.

The story began with Anafghat as a pre-teen, around the same age I was. She was married by age 11, had a stillborn child a few years later, and developed obstetric fistula. I was shocked to learn about fistula’s devastating impact on Anafghat, her life and her future. Fortunately, she received treatment.

After recovering, Anafghat returned to her community of Tarbiyat, in western Niger, where she excelled in her studies, became a spokesperson for girls’ education and empowerment, and decided she wanted to become a medical doctor. But suddenly, at the age of 17, she developed complications from her fistula and died.

One moment, Anafghat was alive, vibrant and empowered, and the next she was dead. I was speechless, and in that moment my life changed. Before my knowledge of fistula, I wanted to become a lawyer. But after reading about Anafghat, I aspired to work in medicine with a specialization in women’s health. A simple Caesarean section could have prevented Anafghat’s fistula, but she did not have access to proper maternal care.

I read everything I could find on the topic. And I discovered that it occurred mainly in sub-Saharan Africa, in countries like Chad, Ethiopia, Liberia, Niger, Nigeria, the Republic of Guinea, Sierra Leone, Somalia and Uganda. In Asia, fistula is prevalent in Bangladesh, India, Nepal and Pakistan. A chief underlying factor is the lack of access to healthcare services.

Then I read the book The Hospital by the River, a personal account written by Dr. Catherine Hamlin about her work with fistula patients at the Addis Ababa Hamlin Fistula Hospital. I also read United Nations reports, perused websites and other resources, including the book Cutting for Stone, a novel by Dr. Abraham Verghese. I began speaking to my peers and teachers about the condition. In high school, I wrote about Anafghat for the school newspaper.

In December 2011 and January 2012, my mother, my sister and I traveled to Ethiopia, where we toured the country for a full month, twice visiting the fistula hospital. We saw first-hand the amazing work of Dr. Hamlin, and we spoke with fistula survivors.

At the Addis Ababa Fistula Hospital, January 2012. (Photo: Lamarana Cooper Diallo)

My visit to the hospital personalized my work as a fistula champion. Indeed, it was the affliction that brought me to the hospital. However, upon meeting with the patients—some of whom were my age—I realized that in spite of their state, they, too, held dreams, ambitions and aspirations in the same way I did.

Back in Canada, I felt in my bones that this was my life’s calling. For four years I had been writing and speaking about fistula to all who would listen. My trip to Ethiopia made me realize that I had to be systematic in my efforts.

In March 2012, I established the Women’s Health Organization International (WHOI). A month later, I turned 16. But instead of having the typical ‘sweet 16’ birthday party, I organized a fund-raiser for WHOI. Until then there was no organization in Canada dedicated to bringing about fistula awareness to help in its eradication—I wanted WHOI to be that organization.

As I began doing fistula awareness work, the Canadian community recognized my contributions, and I began to receive invitations tospeak on the issue. I was also recognized with a number of awards, including the ZONTA International Women in Public Affairs Award, and I was named one of Canada’s Top 20 Under 20 leaders.

TEDx Talk: Fistula: The Silent Menace at St. Mary’s University, Halifax, Nova Scotia. October 2011. (Photo: Halifax Grammar School)

Often, women in the Global South are victimized and patronizingly portrayed. I developed The Empowerment Paradigm (TEP) to ensure that the women affected by our initiatives will ultimately become self-empowered by the support we offer. Self-empowerment is a hallmark of WHOI.

I travelled to Sierra Leone and Guinea, where I met with health practitioners who treat fistula patients. In Freetown, I visited the Aberdeen Women’s Centre, which treats, rehabilitates and provides literacy training for women. In Conakry, I met with doctors and programme coordinators from Engender Health Guinea—an NGO that supports fistula treatment sites all across Guinea. I also visited l’Hopital Prefectoral de Dabola in the region of Haute Guinee.

I am grateful to have been given the opportunity to build awareness about fistula among my social, academic, cultural and domesticcommunities. In all of this, however, there is one important person whom I must thank: my mother. She has supported and encouragedmy endeavour since day one, when I learned about Anafghat. She is always there to lend a sympathetic ear to my interest and work in fistula awareness.

WHOI is committed to the fight against obstetric fistula—a dreadful reality that marginalizes 1 million to 2 million women, strips them of their dignity, and worst, denies them their humanity. We are honoured to be a part of the Campaign to End Fistula and hope that this affliction will soon be eradicated.

By Habiba Cooper Diallo