Shunned by loved ones, Nigeria’s fistula survivors find a lifeline after corrective surgery

Each year, obstetric fistula affects between 50, 000 to 100, 000 women worldwide and Nigeria carries 40 per cent of the burden, according to the World Health Organisation. In this report, Daily Trust delves into the world of Nigeria’s women suffering from the stigma of living with fistula, the lifeline corrective surgery provides, and how the country can end fistula.

Aisha Salihu (not her real name for fear of stigma) lies on her back on a hospital bed staring at the ceiling. It’s been three days since her vaginal reconstruction surgery at the Evangel Vesico-Vaginal Fistula (VVF) Centre of the Bingham University Teaching Hospital in Jos, Plateau State, in North Central Nigeria. Before the surgery, the 42-year-old had lived with fistula for two decades.

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At the age of 20, a pregnant Aisha endured four days of prolonged labour. By the time she was taken to a hospital, she had lost the baby and had sustained a fistula – a hole that forms between the vagina and bladder (or anus) during obstructed labour. As a result of the birth injury, she suffered urinary incontinence. Aisha underwent corrective surgery 20 years ago and returned to her husband in Kano State, North West Nigeria. However, after a few months, Aisha got pregnant and history repeated itself.

Aisha suffered a second stillbirth and sustained another fistula. A quack tried a corrective surgery, but the resulting scar blocked her entire vagina. While in hospital, Aisha’s husband handed her a divorce letter and moved on. She returned to her family in Yelwan Paki, Kiru Local Government Area of Kano State and lived in isolation for 20 years.

“Many people avoided me. They whispered about me because I couldn’t control my urine,” she said. “I tried to make a living by frying and selling pankay (a Hausa snack made from wheat flour) but many people found it repulsive to eat anything I made,” said the 42-year-old.

Three hundred kilometres away, Umma Saidu pushed her green-covered potty under the bed, at the VVF unit of the Gambo Sawaba General Hospital in Zaria, Kaduna State in North West Nigeria. She had been in the hospital for 10 days awaiting corrective surgery for fistula. Umma delivered her first two children at home, and because her husband could no longer access his farm due to insecurity, Umma chose to deliver her third baby at home so as to ease his financial burden. With the help of a traditional birth attendant, the mother of two laboured for over 24 hours before she was taken to a hospital. At the hospital, she was told her baby had died and Umma had sustained a fistula.

The 22-year-old narrated how living with a fistula for two years put a strain on her marriage. “My mother, sister and brother brought me here,” she said, explaining how she arrived at the VVF unit from Saminaka, in Kaduna’s Lere LGA.

“My husband stopped eating my food, he recently remarried and has threatened to divorce me. Even his relatives encourage him to divorce me because of my condition,” she said.

“I’m not sure they know I am here,” she said in a barely audible voice in Hausa, voicing her fear that her husband and his family may have abandoned her.

Aisha and Umma are part of the 50,000 to 100,000  women diagnosed with fistula annually around the world. In 2021, the United Nations Population Fund (UNFPA) said Nigeria carried a 40 per cent burden. Nigeria, which has more than 20 fistula centres, reports 13,000 new cases of fistula annually.

According to the UNFPA, approximately 80-95 per cent of cases of obstetric fistula occur when a young woman experiences prolonged obstructed labour and has no access to a caesarean section. The obstruction can occur because the woman’s pelvis is too small, the baby’s head is too big, or the baby is not well-positioned.

Like the case of Aisha Salihu, who was in labour for four days, the UNFPA, which leads the campaign to end fistula, explains that women can be in labour for five or more days without medical help. As a result, writes the UNFPA, “the baby often dies and if the mother survives, she is left with extensive tissue damage to her birth canal.”

Obstetric fistula remains a source of public concern because it is one of the most devastating maternal morbidities afflicting about two million women, mostly in developing countries.

Why Nigeria has high cases of fistula

Dr Sunday Lengman, the Project Director of Evangel VVF Centre in Jos where between 400 to 600 corrective surgeries are done annually, says that in Nigeria and most developing countries, harmful traditional practices like female genital mutilation contribute to the burden of fistula, while early marriage is an associated factor.

Seventeen-year-old Zara’u Umar (not her real name for fear of stigma) from Katsina State, who was married off at age 15, is one of Nigeria’s child brides. She sustained a fistula after prolonged labour lasting almost two days, and the baby died.

The teenager is one of two in five girls in Nigeria who are married off before they turn 18. Child marriages are more common in the northern part of Nigeria, where Zara’u hails from. Early marriages often lead to early pregnancy and the Human Rights Watch says Nigeria’s rate of child marriage is one of the highest in Africa despite the Child Rights Act (CRA, 2003) which prohibits marriage before age 18.

Her counterpart, 19-year-old Jennifer is one of the one in four fistula patients in Nigeria who become pregnant before the age of 15. More than half of such patients become pregnant before the age of 18. Jennifer got pregnant at the age of 14 and suffered a complicated labour at home before she was eventually taken to a hospital, where her baby died and she was diagnosed with a fistula. She was abandoned by her family after the diagnosis. For four years, the teenager, from Akwa Ibom in south-south Nigeria moved from friend to friend in search of comfort, then in early 2022, a reverend sister took her in and referred her to the Evangel VVF centre where she is scheduled for surgery.

Like Zara’u, Sakina Abdullahi was a child bride. At 16 years, she lost her baby after nine days of prolonged labour. By the time her father learnt of her condition and took her to the hospital, the baby had died and Sakina, who is now 25 years old, had to undergo a womb evacuation. Soon after, she developed an obstetric fistula. Her husband remarried, threw her out of the house and followed it up with a divorce letter.

“He told me he couldn’t live with me because of the smell. He said there was no treatment for my condition and divorced me,” she narrated.

Preventing fistula

According to the WHO Guideline for obstetric fistula, the injury can largely be avoided by delaying the age of first pregnancy, eliminating harmful traditional practices and providing timely access to obstetric care. The United Nations member states have adopted a resolution to end fistula by 2030 as a major contribution to achieving the Sustainable Development Goals. UNFPA, which leads the Campaign to End Fistula, explains that fistula can be prevented by sexual and reproductive health care, access to contraception, access to skilled birth attendants and high-quality emergency obstetric care.

However, the lack of access to emergency health services puts girls like Zara’u, Jennifer and Sakina at risk of obstetric fistula.

Dr. Sadiya Nasir, the Acting Medical Director at the National Obstetric Fistula Centre in Katsina State, where an estimated 400 surgeries take place annually, said that women in rural areas are particularly at risk because they often live in remote areas, far from health centres.

“Women in remote areas sometimes travel far to access healthcare and a woman can labour for two or three days because she can’t reach the final destination where she can access healthcare,” explained Dr Nasir.

“We need to get health centres close to these rural women; health centres that are equipped with the necessary facilities and manpower that can do an emergency caesarean section. If we can improve access to quality healthcare in Nigeria, then we will go a long way in preventing fistula,” she said.

Where access to healthcare is a challenge, many women give birth at home without assistance from skilled birth attendants. Data from the Nigeria Demographic and Health Survey 2018 showed that 59 per cent of women delivered their last live birth at home, and only 39 per cent of women delivered in a health facility. Further, 70 per cent of births by mothers aged below 20 happened at home, compared to 57 per cent of births by mothers aged 20-34 and 59 per cent of births by mothers aged 35-49. The data also showed that only 26 per cent of births in rural areas were in a health facility, compared to 61 per cent of births in urban areas.

Where access to healthcare is a challenge, many women give birth at home without assistance from skilled birth attendants. Data from the Nigeria Demographic and Health Survey 2018 showed that 59 per cent of women delivered their last live birth at home, and only 39 per cent of women delivered in a health facility. Further, 70 per cent of births by mothers aged below 20 happened at home, compared to 57 per cent of births by mothers aged 20-34 and 59 per cent of births by mothers aged 35-49. The data also showed that only 26 per cent of births in rural areas were in a health facility, compared to 61 per cent of births in urban areas.

This lack of access is in contravention of the international obligations that bind governments to ensure every woman’s right to safe and respectful maternal health care. For instance, Article 12(2) of the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) enjoins state parties to ensure women get access to appropriate services during pregnancy, childbirth and the postnatal period, including granting free services where necessary. Article 14 (2b) of the convention, which Nigeria has ratified, also provides that women in rural areas should have access to adequate health care facilities, including information, counselling and family planning services.

However, a recent revelation by the National Primary Healthcare Development Agency (NPHCDA) showed that about six out of ten Nigerians lack access to quality primary healthcare services, indicating that the Nigerian government has failed to provide adequate reproductive and maternal health care, a core obligation.

Further, the Demographic Health Survey outlined four significant barriers to women accessing reproductive health care: Having to seek permission to go for treatment, getting money for the treatment, distance to health facility, and women not wanting to go alone.

In these circumstances, women and girls at risk of fistula don’t get timely obstetric care as recommended by the WHO, putting them at risk of sustaining fistula.

Abandoned and shunned

After the birth injury, women with fistula suffer from continuous wetness which comes with an offensive smell.

“Most of the women drink less water so as to pass less urine. Unfortunately, if you take less water, you will pass less urine, and the urine will be very concentrated. So, the smell is more offensive and their skin gets irritated. They have an itch and pain, and people keep away from them,” said Dr Lengman.

As a result of the smell, they are often abandoned by their spouses, excluded by their families and communities and left to live in pain and isolation. “Their men bring them here and abandon them. If she recovers, she can find her way home but if not, that may be the end of the marriage,” said Maimunah Ibrahim Muye, the matron at Gambo Sawaba General Hospital in Zaria.

Sumbo Ojegbile, the matron at the Evangel VVF Centre in Jos, said that many women are divorced by their husbands and shunned by their families after sustaining a fistula.

Forced to live in isolation, many fistula patients develop anxiety disorder and sometimes slip into depression and harbour suicidal thoughts, says Dr Joyce Pamela Oseghale, a psychiatrist at the Federal Neuro-psychiatric Hospital in Kaduna State.

For this reason, says mental health expert Dr Oseghale, managing Nigeria’s patients with fistula will not only require corrective surgeries but also psychosocial support to help them reintegrate into society. Dr Oseghale adds that there is a need for social support networks for fistula patients and free mental health care provided by the government.

Neglected by their families and communities, most fistula patients are unable to care for themselves financially. That’s why, says Dr Lengman, the Evangel Hospital in Jos has an empowerment unit where patients are taught sewing and knitting so as to become self-reliant when they return home. The patients are also taught to grow their food and sell the surplus to improve their income. This way, surgery and rehabilitation give many a lifeline back to a normal life.

Finding succour for fistula survivors

Sakinatu returned to the VVF unit of Gambo Sawaba Hospital in Zaria eight months ago to await her next surgery. Meanwhile, she has learnt to sew at the centre’s empowerment section where fistula patients are taught knitting, sewing, and pottery and undergo some form of adult education.

Besides, Sakinatu has made friends with a fellow patient who has suffered from fistula for 10 years. “I left my family to come here because of the stigma,” she said, explaining how her female cousins will not eat from the same plate with her. “Here, I have found relief and I now know how to sew. Getting empowered offers a second chance in life and an opportunity to address some of my financial challenges,” she said.

Like Sakina, Amina Hassan, from Potiskum in Yobe State who is also at the Zaria hospital says while awaiting a specialist who will perform her second surgery, is now learning to knit sweaters which will serve as her trade when she leaves the hospital. “My father who was assisting me financially is dead and my husband has divorced me. I will have to rely on this for financial income,” she said.    

This report was supported by the Africa Women Journalism Project (AWJP) in partnership with the International Centre for Journalists (ICFJ) with the sponsorship of the Ford Foundation

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