Fistula scars: Liberia's forgotten women
Twenty-two-year-old Naomi George is visibly shaken as she fights back the tears, recalling the night her life changed forever.
In 2019, the heavily pregnant Liberian endured a harrowing ordeal when she went into labor. Despite intense contractions, her midwife dismissed her symptoms, insisting the baby wasn't ready.
This meant she had to suffer through the night in pain before finally being rushed to a hospital. Even there, her birthing was delayed until the following afternoon. By this time, it was too late—she had had an intrapartum stillbirth, meaning the baby did not survive.
A few weeks later, George was diagnosed with obstetric fistula, a debilitating childbirth injury, which results mainly from prolonged, obstructed labor, especially where access to medical support is lacking.
It is a condition that causes constant incontinence and for many, shame and exclusion.
"Losing a child is devastating, but being diagnosed with fistula is a different kind of pain," says George. "Social stigma and ostracization push you into a corner, making you hate yourself and question your existence, as people do not easily tolerate your presence."
The story was similar for Anna Sumo. She was devastated when she was diagnosed with obstetric fistula in 2012. Over three months, Sumo underwent two surgeries but did not heal.
"It's so hard to live with urine leakage from you every day," she says. "Every time I think about it, I get sad."
According to UN figures, an estimated half a million women and girls are living with obstetric fistula globally, with thousands of new cases occurring each year. Most of these are in Asia and Sub-Saharan Africa.
The consequences can be devastating as victims are ostracized while dealing with traumatic physical ailments, including incontinence, infections, and chronic pain as a result of the constant leaking of urine, feces, or both.
The malodor of fistula makes it practically impossible for those affected to work or participate in social activities, deepening their poverty and social isolation.
"Women in the maternity ward asked that I be isolated because I wet the bed," George recounted. "In addition to the pain of having lost my baby, I didn't understand what was happening to me. I was giving off unbearable odors. No one deserves to experience this."
In Liberia, the leading risk factors for fistula are common, including early age pregnancy, lack of proper obstetric care, low-skilled birth attendants, rape and other abuses.
The country is one of the poorest in the world, bearing the legacy of conflict and the Ebola crisis. And there are critical gaps in its health care system, according to the World Health Organization (WHO).
Government 'inaction'
John Mulbah is a gynecologist and professor of the University of Liberia's College of Medicine, who has become known as Liberia's "fistula doctor," being one of the few fistula surgeons in the country. He tells SciDev.Net that fistula, particularly obstetric fistula, reflects the tragic failure of government to protect the reproductive rights of women.
According to Mulbah, the Liberian government could eradicate obstetric fistula by investing in maternal health care services, including training more surgeons and hiring more skilled birth attendants to provide emergency obstetric care promptly. But political will has been sorely lacking, he says.
"As far as I am concerned, the Liberian government has not used a cent on fistula," says Mulbah, who is also second vice president, the Liberia College of Physicians and Surgeons.
"This inaction increases the risk associated with the broader health inequities, leaving the vast majority of women and girls of childbearing age across the country vulnerable to obstetric fistula."
Liberia has just one health facility—the Phebe Hospital, in Suakoko, Bong County—that is equipped to handle fistula cases. The faith-based hospital which opened in 1921, treated about 2,000 obstetric fistula patients between 2008 and 2022, according to data from the United Nation Population Fund (UNFPA) Liberia office.
It houses a dedicated fistula center, set up with funding from the UNFPA. However, changes to funding have led to drastic cuts to patient admissions, according to hospital staff.
Fistula can be treated by surgery and sometimes one victim may require multiple operations over a long period. George has had six surgical repairs since being admitted in 2019 but says she still experiences regular urine leakage.
Her condition has left her with no choice but to reside at the center, where she is now one of only two remaining patients.
'18-month wait'
According to Dignity: Liberia, an NGO that advocates for obstetric fistula victims, more than 1,200 are suffering from fistula, and need reparative surgeries with the average of women between 11-22 years old. Some experts say the number could be even higher.
"If a woman can get to a hospital, it is not uncommon for her to experience an 18-month wait for surgery, or longer," says Dignity: Liberia on its website. "Medical supplies are scarce, and supply infrastructure systems are broken nationally. Even when one of those physicians is available, there may not be adequate medical support or supplies to offer the healing that's needed."
Mulbah, the country's best-known fistula surgeon, says that, in the absence of further investment, the primary mode of treatment for fistula will remain direct care from visiting medical professionals.
"It is about time the government formulated some budgetary allocation for fistula management," he adds. "Funding for fistula needs to be prioritized and nationally owned, not donor-oriented."
He cited the example of Ivory Coast, one of Liberia's neighbors, as a "government that cares" and whose support program the government of Liberia can emulate.
In 2022, Mulbah was invited by the Ivorian government and UNFPA to conduct fistula surgeries for six weeks. He says he was amazed to see how Liberia's neighbor prioritized the health of its women and the investment it made toward tackling fistula, including training more doctors as surgeons.
"There is good political will. There is very good support. They have hospitals well-equipped for fistula surgeries," says Mulbah.
No funding for fistula
Liberia's 2018–2024 health budget shows that there is no funding for fistula care during the mentioned period. Liberia's Minister of Health, Louise Kpoto, and President Joseph Boakai have yet to release any policy statement on fistula care.
This is despite the fact that Boakai, while serving as vice-president for 12 years during the administration of former President Ellen Johnson Sirleaf, participated in several fistula day events and made a commitment on behalf of the Sirleaf administration to eradicate fistula.
While treatment for fistula has been provided in Liberia since 2008, there has yet to be a record of public money spent by successive governments of Presidents Sirleaf and George Weah, who lost power to President Boakai during a bitterly fought election in 2023.
Rather, the fight against fistula has been donor-led, with UNFPA being at the forefront, footing the bills starting from 2008 when it launched the Liberia Fistula Project with US$3.5 million in funding from Zonta International, a women's rights advocacy group.
Obstetric fistula and other reproductive health conditions are mentioned in the draft revised Public Health Law put before the Liberian Senate.
If passed, the Ministry of Health will adopt regulations to ensure access to quality and acceptable sexual and reproductive health and family planning services, information, and education.
The then United Nations Mission in Liberia funded and opened the country's first-ever fistula center at the John F. Kennedy Memorial Hospital, in 2007, with Mulbah, the head of the maternity center, running it.
As well as treating obstetric fistula, the fistula center also handled cases of traumatic gynecological fistula, a vaginal injury resulting from violent sexual assault, or when objects are forcibly inserted into the vagina.
UNFPA fistula center
The center, which the UNFPA relocated to Phebe Hospital a few years later, has been operating below its capacity since 2018 when donor funding through UNFPA dried up.
The Fistula Rehabilitation and Reintegration Center at the Phebe Hospital is a ten-bedroom dormitory that includes a training center. It hardly admits patients now as there is no funding for complex and costly surgeries or the provision of livelihood training such as tailoring, pastry making, cosmetology, and soap-making.
Kerson Saykor, administrator of the hospital, says the fistula center was built to provide 24/7 support to fistula victims until their recovery, but this is now impossible with no allocated budget.
According to Saykor, since funding from UNFPA ceased in 2018, the hospital has been struggling to respond to the needs of fistula patients and has limited the number of admissions, despite being the referral hospital for fistula cases across the country.
"The funding from the UNFPA was very instrumental in providing all-around care for fistula victims, but since it ceased, we have to rely on donations from individuals and institutions to conduct free surgeries," says Saykor.
"The government is yet to match UNFPA support, so when we do not have donations, patient intake has to be limited. This is not what we wish for, but we have no choice."
He says the center is still providing fistula treatment but at a much reduced level. The center itself did not provide any data on the number of patients receiving treatment.
Julie Wiah, health committee chairperson in Liberia's House of Representatives, declined an interview request on the subject.
National fistula strategy
A UNFPA spokesperson said the UN agency had not technically halted or ceased funding for Phebe Hospital, but its support towards the Liberia Fistula Project had shifted towards "integration and sustainability."
"Towards this new thinking, in 2022/2023, UNFPA supported the Ministry of Health to develop a national strategy for obstetric fistula, and in 2024, UNFPA is also supporting the training of one national surgeon," the spokesperson said.
"[The] strategy outlined the need to establish five regional medical treatment and surgical repair hubs [and] the expansion of services by training medical teams, including surgeons."
According to the UNFPA, between 2008 and 2022, about 2,000 survivors of obstetric fistula received treatment and repair services, and half of them were provided with psychosocial support, counseling, and income-generation training to facilitate their rehabilitation and community reintegration.
"This comprehensive support to managing fistula survivors allows them to restore normalcy and contribute to their families and communities' social and economic livelihood," the UNFPA noted.
George, who says she has been abandoned by her family for six years, hopes that the government can step in so that she can make a full recovery.
"I just wish help can come back so Phebe can perform the last remaining surgeries on me," she says. "I cannot wait to heal and get back to my normal life."
Fistula data needed
Liberia's Ministry of Health has no available data on the current cases of fistula in the country, said Ruth , Liberia's ministry of health fistula coordinator, without elaborating on why.
This is despite the fact that the country's fistula strategy calls for inclusion of fistula data in the country's health information management system to enable informed decision-making. This should include data on the incidence and prevalence of obstetric fistula and the level of care being received by victims.
Mulbah, who was the country's fistula program coordinator until 2018, says the absence of data makes it difficult for the country to develop an efficient strategy to tackle—and eradicate—fistula.
"We should have that. How is it possible they were not putting fistula data in their information system?" he questions.
Mulbah's contract ended when the UNFPA funding for the Liberia fistula project dried up and the strategy was switched to "integration and sustainability."
He believes that fistula can be eradicated if women have access to quality maternal health care services, including trained doctors and nurses present at the birth of their babies and prompt emergency obstetric care.
"The government needs to start pumping money into training more surgeons, gynecologists-obstetricians, or urologists to have more trained medical professionals to handle cases of fistula," he urges.
Until then, George will be at the Phebe hospital, waiting for the fistula center to receive funding for a doctor to complete her surgery.
Provided by SciDev.Net