LILONGWE, Malawi – Monica Kaleso loved to go to school. She studied hard and never missed class. Her dream of becoming a medical doctor was on course until 2013, when, at the age of 17, she began a relationship with a man from the same village of Kadammanja.

Later that year, Ms. Kaleso discovered she was pregnant. Her world crumbled.

Her boyfriend refused to take any responsibility. Ms. Kaleso was devastated. She eventually dropped out of school.

After going into labour, Ms. Kawelo struggled to find reliable transportation for the bumpy journey to the hospital. When she finally did arrive, she was unable to get immediate treatment. The hospital was small and the staff busy.

"The baby was very big and I was so young," she recalled, explaining that she experienced a prolonged, obstructed labour.

Yet she spent three days at the hospital before receiving help.

Tragically, the baby did not survive childbirth. And that was just the beginning of Ms. Kaleso’s problems.

The morning after returning home from the hospital, she woke up and noticed her bedding was wet with urine.

Ms. Kaleso had developed an obstetric fistula, an injury caused by childbirth complications. Fistula causes incontinence and can also lead to infections, chronic pain and other problems.

‘I was too young to live this life’

"I thought it was normal, but this occurred for almost a year,” she told UNFPA.

Like many fistula survivors, Ms. Kaleso suffered stigma and isolation. Her friends turned away when she approached them.

​

Her hopes of going back to school after delivery faded.

Ms. Kaleso said life became unbearable.

“I did not even know if this condition could be treated or not,” she recalled. “I was too young to live this kind of life.”

But one day, as Ms. Kaleso's father harvested his tobacco crop, he heard on the radio that fistula treatment was available at the Bwaile Centre in Lilongwe.

Soon after, Ms. Kaleso underwent successful surgerical fistula repair.

Back to school

UNFPA data show that 0.6 per cent of women aged 15 to 49 were living with this condition as of 2016 in Malawi.  UNFPA has supported treatment for over 1,500 women in the country since 2011.

Many of these repairs have taken place through a partnership with the Bwaile Centre, which has a specialist surgeon and programme that helps survivors reintegrate into the community after treatment.

Ultimately, UNFPA and Malawi aim to transition from fistula repair to prevention. The condition is easily prevented through access to emergency obstetric care – usually in the form of a Caesarean section. In fact, fistula is so preventable that it has been essentially eliminated in industrialized countries.

Ms. Kawelo is now an ambassador for the Bwaile Centre. She helps seeks out other fistula survivors and helps them access treatment.

She has also been able to return to school. Her new dream is to finish her degree in education and teach mathematics.

“I consider myself very lucky," she said. "Some women have lived with this condition for more than 40 years, and others even 50 years or more.”

For Won Young Hong, UNFPA’s representative in Malawi, Ms. Kawelo's story demonstrates why adolescent girls need access sexual and reproductive health information and services.

“One pregnancy can have life-threatening consequences, such as HIV and other sexually transmitted diseases, birth injuries including fistula, more children, and they are at risk of dropping out of school, and thus perpetuating the cycle of poverty,” Ms. Hong said. “It is encouraging to see that Monica is back in school and pursuing her dreams”.

– Henry Chimbali

"My grandchildren will play with me. I am clean. I can practice my faith. I can live" - A fistula surviver rejoices

KABUL, Afghanistan – “I saw myself as the living dead,” 50-year-old Laila* told UNFPA. She suffered terribly while giving birth in Pakistan 27 years ago. The prolonged, obstructed labour left her with an obstetric fistula – one of the most serious injuries that can occur during childbirth.

The fistula – hole between the birth canal and bladder or rectum – can cause pain and chronic infections. It also causes incontinence, which often leads to women’s social isolation.

Yet the injury has been eliminated in much of the world through modern emergency obstetric care. Those who continue to suffer from obstetric fistula tend to be among the most marginalized and vulnerable.

“At the beginning, I was ashamed to tell anyone that I had fistula. Most of the time, I could not take part in social gatherings because I smelled bad,” Laila recounted.

As can be the case for fistula survivors, Laila lived with the injury for decades.

A new life

According to a 2015 survey, approximately 3 per cent of ever-married Afghan women have experienced obstetric fistula. Contributing to this high prevalence are the country’s high rates of child marriage and adolescent birth – early childbearing increases the risk of complications.

Poor access to health services also plays a key role. Only 51 per cent of births in Afghanistan take place with the help of a skilled birth attendant.

But there is help.

Years ago, Laila moved from Pakistan to Paghman Province in Afghanistan. Then one day she learned about the Malalai Maternity Hospital in Kabul, where surgical fistula repair is available.

Afghanistan’s only expert fistula repair surgeon works at the Malalai centre, along with four additional surgeons who provide basic fistula operations.

The treatment was a success, she says. “The operation has given me a new life," she said.

“Live a normal life”

Twenty-year-old Farah* also suffered a prolonged labour during childbirth at her home in Afghanistan’s Faryab Province six months ago.

“My life became very hard. I could not talk to anyone about my condition because of shame,” she recounted to UNFPA. “It made my life completely unbearable.”

The injury caused pain and bleeding, as well.

“I could not work, sleep or walk as I did before. I was not able to go out because of bleeding. I was not able to sit on the ground, on chairs or on carpets because of my illness.”

She isolated herself. “I could not gather with my relatives and family members because of my bad smell. I was fed up of my life. I should have been working in the home with cooking, cleaning and doing laundry as a housewife but was not able to do any of that properly. I felt incapable and useless in society.”

Fortunately, her family stood by her.

“They knew that I had fistula but they never changed their behaviour towards me. They never left me to suffer alone,” she said.

Not long ago, one family member learned about the Malalai fistula centre and helped Farah get treatment.  

“I am happy, healthy and hopeful again after the operation,” she said. “I am a capable member of society once more and can start over with my child, husband and family members and live a normal life.”

Helping others

UNFPA helped to establish the Malalai fistula treatment centre in 2007, and continues to provide support to its operations. UNFPA covers the cost of treatment, medication and transport for patients, and supports training for the hospital’s expert fistula surgeon.

There are also four additional surgeons providing fistula repair in two other provinces, Herat and Jalalabad. Since 2010, more than 600 surgical fistula repairs have taken place in collaboration with the Afghan Ministry of Public health, including 45 this year.

Still, across the country there is a major shortage of surgeons able to perform these operations. In addition, rehabilitation and reintegration programmes – which can help survivors overcome social isolation – are not available.

Farah wants to help other women avoid her ordeal.

“I would like to encourage every woman suffering from obstetric fistula to seek help without any concern and shame,” she said. “I also want to tell them to be careful not to go through childbirth without a skilled birth attendant to assist during delivery.”

*Names changed for privacy reasons
 

Statement of UNFPA Executive Director Dr. Natalia Kanem on the International Day to End Obstetric Fistula, 23 May 2019

Shame, isolation and segregation are among the indignities faced by the hundreds of thousands of women and girls worldwide who suffer from obstetric fistula, an injury of the birth canal after prolonged and obstructed labour. The girls and women afflicted by the condition, which is preventable and largely treatable, are often plagued by chronic incontinence. As a result, they face devastating social stigma.

The majority of women and girls who suffer from fistula are poor. Their inability to receive prompt medical treatment not only deprives them of their health and dignity, but is a violation of their human rights.

UNFPA leads the Campaign to End Fistula. Since 2003, UNFPA has supported over 100,000 fistula repair surgeries, and campaign partners have supported thousands more, enabling women and girls in more than 55 countries across Africa, Asia, the Arab region and Latin America to regain hope and rebuild their lives.

One survivor, Nasiwelo Bisolomo, lost her baby at the age of 18 after a prolonged obstructed labour at home. She suffered from fistula for the next 46 years. She nearly had lost all hope when she heard of a UNFPA-supported fistula camp and travelled 300 km to undergo the life-transforming healing surgery. Now, she is helping spread the word that fistula treatment is available.

It is time for the world to heed the call made by United Nations Member States in the 2018 United Nations Resolution on Ending Fistula in which they committed to eradicating the condition within a decade. Yet, achieving this goal requires increased investments, innovations and partnerships. Failure to take action will undermine our chances of achieving the Sustainable Development Goals, meeting the commitments of the International Conference on Population and Development, and ensuring no one is left behind.

No woman or girl should be deprived of her dignity, hopes and dreams. Fistula is a human rights violation – end it now!

Fistula is a sad, shameful and isolated life of over two million women around the world.

DHARAN, Nepal – At the age of 17, Palesh Devi Rajdhobi was married off to a man she had never met. One year later, she gave birth to her first child. Then another, and another. When she was pregnant with her sixth, she knew something was wrong.

“By the time I was taken to the hospital, it was already too late. Two tragedies befell me. I had a stillbirth and started leaking urine constantly,” Ms. Rajdhobi told UNFPA.

After a prolonged labour, she had developed an obstetric fistula, a hole in the birth canal that renders women incontinent, unable to control their urine, faeces or both. Left untreated, the condition can cause infection, pain and a host of other problems – including social isolation and depression.

“I was thinking that I would leak urine throughout my remaining life and there was no cure for my suffering. I was always ashamed to leave the house because of the smell,” Ms. Rajdhobi said.

Fistula is one of the most serious childbirth injuries. And it is almost entirely preventable. 

With access to maternal health care – particularly, caesarean sections – the injury has been largely eliminated in much of the world. 

Yet it still afflicts the most marginalized women and girls, those without the money or ability to receive quality obstetric care. Girls who become pregnant too early, such as child brides, are especially vulnerable. 

Today, more than 2 million women in the developing world are estimated to be living with the condition.

“Nobody would insist on visiting health centres for pregnancy check-ups back then,” Ms. Rajdhobi explained. “There were no means of transportation. We had to walk at least four hours to reach the nearest health facility.”

Shunned

For more than two decades, Ms. Rajdhobi lived with fistula. 

The social isolation she suffered as a result was particularly unbearable. Instead of going to the market and visiting friends and family, she was confined to the privacy of her home, too distraught to encounter community members who spoke ill of her.

She is not alone.

Nara Maya Rai, now 64, was left with the debilitating childbirth injury after her third pregnancy. 

“[Back in] that time,” she recalled, “a pregnant woman in our village had to be carried four hours in a bamboo basket, and then three hours in a vehicle if she were to be taken to a hospital.”

Ms. Rai lives roughly 400 kilometres from the nearest large city. After developing an obstetric fistula, she, too, was ostracized from her community. “When I would go close to a village assembly, some of them would cover their noses and ask where that bad smell emanated from. I would wash my clothes several times a day.”

Hardest to reach

These stories are all too common – in Nepal and throughout the developing world. According to UNFPA data, an estimated 50,000 to 100,000 new cases of obstetric fistula develop each year.

As the leader of Campaign to End Fistula, UNFPA provides technical guidance, medical supplies, training and funds for fistula prevention, treatment and social reintegration programmes. UNFPA also strengthens reproductive health care and emergency obstetric services to prevent fistula from occurring.

In Nepal, UNFPA is supporting BP Koirala Institute of Health Sciences to provide free surgery and post-operative care to women who live with the injury. Over 30 women have already received treatment, of an estimated 200 to 400 who suffer from fistula each year in Nepal.

UNFPA is also working with its partners to raise awareness of the condition.

“In rural areas, many women and girls living with fistula do not receive any family support and never seek treatment, because they don’t know what is wrong with them and where to seek service,” said Maiya Bhattarai, a community mobilizer who orients women on obstetric fistula. 

“We particularly engage women who are hard to reach, such as those living in rural areas and who are poor,” she said.

Tears of happiness

Ms. Rajdhobi and Ms. Rai are two of the women to receive free reconstructive surgery from the UNFPA-supported campaign in Nepal.

For them, life without fistula brings more than freedom from pain. It brings freedom from isolation.

“It was like walking out of prison," Ms. Rajdhobi said, still remembering the day she left the hospital. "I was in tears of happiness.”

                                                                                                                                   – Santosh Chhetri

SANA’A, Yemen – Najat, a trained midwife, was well aware of the dangers of pregnancy and childbirth. But when her own health needs and professional judgment clashed with her husband’s traditional ideas, she suffered in ways she could not have imagined.

Najat was a midwife in the Wesab area of Dhamar Governorate. When she got married, she moved to her husband’s village, and continued practicing midwifery – even riding a donkey to reach faraway patients.

“It was difficult in the beginning to cope with the new environment. But then I managed to build good relations with the villagers, and I started to provide midwifery services to women in the village,” she told UNFPA.

She delivered 36 babies in her new village, and encouraged women to give birth in the hospital when possible.

But her own family would not heed this advice.

On death’s door

Najat became pregnant in her first year of marriage, and was overjoyed. She sought regular check-ups to ensure the health of her pregnancy. When she learned the fetus was not in the proper position, the solution was clear: a Caesarean section delivery.

But her in-laws disapproved.

The family was conservative, and they had long objected to Najat’s midwifery practice. They felt maternal health services were indulgences.

When Najat insisted she needed hospital care, her mother-in-law intervened. “She told me that there was no need for the hospital. She had given birth to many children before and did not need the hospital,” Najat recalled. The family regarded hospital care as “a mere luxury.”

As Najat feared, she went into a prolonged, obstructed labour, a potentially fatal condition for both mother and baby. She begged her husband and mother-in-law for help, but they ignored her – for days.

“I stayed for four days suffering from pain trying to give birth, but in vain,” she said. “My body was exhausted, and I was physically and psychologically worn-out.”

It was only when they saw she was on the brink of death that they reluctantly agreed to transport her to a hospital.

As soon as she arrived, an emergency C-section was performed. Miraculously, both Najat and her daughter survived.

More bad news

But Najat’s ordeal was only beginning.

As she recovered from surgery, she discovered further complications. “I thought that an open water bottle behind me might have fallen and I did not notice it. Eventually, I realized the wetness was coming from me.”

She realized she had developed an obstetric fistula, a hole that develops when birth canal tissues die following a prolonged, obstructed labour. The condition causes incontinence, infections and social isolation.

Because it can be prevented with timely access to a C-section, the injury has been largely eliminated in much of the world. Today, it afflicts the most marginalized women and girls – those without the power, money or ability to receive emergency obstetric care.

Separated from her baby

The doctor confirmed her diagnosis.

Although she required further recovery, Najat’s husband and mother-in-law insisted she return to their village to resume her domestic duties.

“Thinking about the continuous leaking of urine and walking with the catheter was just embarrassing and humiliating in the presence of many of my sisters-in-law in the house,” Najat said.

“Who would accept me like that? Who would clean after me constantly?  I also had my own daily home chores. That scenario was difficult to handle. So I decided not to go back to the village.”

Her husband returned to his village, taking their daughter with him.

Najat went to her parents' house. For months, her family tried to bring the baby back to see her, but their attempts failed.

Finding the space to heal

Meanwhile, Najat learned about a UNFPA-supported fistula unit at the Al-Thawrah Hospital in the capital, Sana’a. “Through a WhatsApp group, I read the announcement about treating fistula cases for free. I contacted them,” she said.

Her family was able to raise the funds needed to transport her to the hospital. Finally, seven months after giving birth, she received a surgical fistula repair.

“I got treated, and here I am,” she told UNFPA.

Since 2011, the UNFPA-supported fistula treatment units in Sana’a and Aden have successfully treated nearly 290 cases of obstetric fistula.

Survivors, who often endure months or years of stigma, may also require assistance reintegrating into their communities. But Najat knew just how to resume her daily life.

She began working in a private hospital in Sana’a. Today, she is on a waiting list to receive UNFPA assistance to open up her own home-based midwifery clinic.

She is happy to be starting a new future, but her heart aches for the baby who was taken from her. “I cannot dream anymore,” she said.

MULANJE DISTRICT, Malawi – Margret Rambiki was just a teenager, married at 14, when she nearly died in childbirth.

It was 2002 in the Mulanje District of southern Malawi. A child bride, Ms. Rambiki may have been physically unready for pregnancy.

Her labour was prolonged and obstructed, a potentially deadly complication. And her access to emergency care was dangerously delayed. She remembers her father arguing with the health care provider because of their long wait for assistance.

Tragically, the baby was stillborn, and Ms. Rambiki was left with an obstetric fistula – a hole in the birth canal – that left her incontinent and vulnerable to a host of other medical concerns, including infections. 

“I never enjoyed being a woman since I had this condition,” she later recalled. “It was tough to live.”

Today is the International Day to End Obstetric Fistula. Fistula is one of the most serious and tragic childbirth injuries, and it is almost entirely preventable. Access to proper maternal health care, particularly Caesarean sections to treat obstructed labour, can save the lives and health of both women and their babies. 

Yet more than 2 million women in the developing world are estimated to be living with this condition. Its persistence is a sign that health and protection systems are failing women and girls.

A life-changing conversation

Ms. Rambiki lived with obstetric fistula for 13 years. In that time, she had a son and a daughter. But, like many fistula survivors, she was isolated, enduring ridicule if she left home. She was unable to do community work, attend funerals or visit church, she told UNFPA.

And nothing seemed to help. “Traditional herbalists tried everything, and we had been told to do lots of things but the condition was never healed,” she recalled. “When you are in that situation, you try almost everything.”

But one day three years ago, her mother was chatting with neighbours at a nearby borehole. Someone mentioned that a woman in the district had received treatment for chronic urinary incontinence. It turned out a fistula repair camp was taking place at Mulanje district hospital.

She rushed to tell her daughter.

Over 25 women received treatment during the UNFPA-supported event, including Ms. Rambiki. 

“I am now dry. I have no problem,” Ms. Rambiki said. “This is how a woman should be.”

Many of the women, like her, had endured the condition a long time. One lived with fistula for 66 years. 

Becoming an advocate

It is estimated that 1 per cent of women in the country have experienced an obstetric fistula, according to a 2016 survey.

UNFPA has been working with the Government of Malawi, the Freedom from Fistula Foundation and AMREF Health Africa on fistula treatment efforts since 2011.

Earlier this year, UNFPA organized another fistula repair camp at Mulanje hospital, treating 28 women, and referring others for specialized treatment. Women from the surrounding districts of Blantyre, Chiradzulu, Neno, Phalombe and Thyolo, and from across the border in Mozambique, came to access the services.

“This treatment outreach approach has brought services significantly closer to the underprivileged women who suffer in silence while seeking treatment,” said Grace Hiwa, a fistula expert with UNFPA. 

The camp also mobilized more than 60 women to raise awareness about the condition. Ms. Rambiki was one of them.

Since her treatment, she has become an advocate for fistula survivors, helping multiple women receive repairs. At this year’s event, she helped a 33-year-old friend receive treatment.

She says she still thinks back to the fateful day that she learned there was hope – and help – for women with obstetric fistula. 

“That morning when my mum went to draw water saved my life,” she said.

JIMMA, Ethiopia – After her wedding at age 20 in the Seka District of Ethiopia, Birkisa Aba Nega became pregnant. Then again, and again. Four of the five children she delivered died, and she was left with a debilitating childbirth injury – an obstetric fistula.

Pregnancy can be a dangerous time, and for women with ill health, malnutrition or underage pregnancy, the risks are even higher.

One of the most serious complications a woman can experience in childbirth is prolonged, obstructed labour. Women who survive this condition can develop an obstetric fistula, a hole in the birth canal that leads to chronic medical problems, including pain and infection, as well as incontinence.

This misfortune is often compounded. Women who develop obstetric fistula typically also deliver a stillborn baby. And the stigma of chronic incontinence can cause women to be isolated, even shunned.

Shamed, shunned

Obstetric fistula affects the most vulnerable, marginalized women – those without access to quality obstetric care. Ms. Aba Nega was one of those women. She never received antenatal services, and she delivered at home, without skilled care, for her first four pregnancies. 

During her last pregnancy, she was in labour for a day and a night before an ambulance was summoned. She was taken to a health centre then transferred to a hospital, but it was too late. She lost the baby.

By the time she had returned home, she began to show signs of developing an obstetric fistula. As the condition worsened, Ms. Aba Nega’s husband began to avoid her.

She stayed home, isolated from her community, for more than a year.

These circumstances are all too common. According to a 2016 national survey,  only 62 per cent of women in Ethiopia receive antenatal care, and only 28 per cent of births are attended by a skilled health provider at a health facility. A 2013 study by USAID estimated that 36,000 to 39,000 women in Ethiopia are living with obstetric fistula, and that 3,300 to 3,750 new cases occur every year.

Three years ago, the Government of Ethiopia launched a campaign to eliminate obstetric fistula by 2020. UNFPA is supporting this effort by helping to identify fistula survivors and supporting surgical repairs at hospitals in Assela, Gondar and Jimma.

UNFPA’s contribution includes training mid-level health professionals and community health workers on the prevention and diagnosis of fistula, and supplying equipment to facilitate prevention and repair efforts.

Progress in ending obstetric fistula

In the year after she developed the fistula, Ms. Aba Nega’s husband consulted many traditional healers, to no avail. Finally, he took her to a local health centre, which referred her to Jimma University Medical Centre.

At Jimma University, training in obstetric fistula care has been integrated into the teaching programme. Mid-level health professionals also learn to address fistula – and related conditions, such as uterine prolapse – through an in-service training programme.

Slowly, progress is being made.

Local-level health workers now identify fistula survivors and refer them to UNFPA-supported fistula repair centres.

In addition, Healing Hands of Joy, a partner in the UNFPA-led Campaign to End Fistula, is training survivors like Ms. Aba Nega to raise awareness of fistula prevention and treatment in their communities.

These efforts are paying off. More and more fistula patients are seeking help.

As for Ms. Aba Nega, she has received a surgical repair and is looking forward to helping other women do the same.

“I am very happy,” she said. “I will go back home to my husband and child. I will also inform those living with this problem in our locality to go and get treatment, like me.”

– Abraham Gelaw