JAHUN, Nigeria — At age 17, Amina spent four days in labor in a remote village in northern Nigeria.
Her baby died and Amina, of the semi-nomadic Fulani people, was left with a terrible injury that caused her to leak urine constantly. Ashamed of her condition, she spent the next 16 years a virtual recluse at her parents’ home, interacting only with her immediate family of nine people.
“They were hard years,” she said. “I didn’t go out, not to the market, not to anybody’s house.”
When a mother’s labor becomes obstructed and the baby’s head presses against mother’s pelvic bones, it can cut off blood supply to the soft tissue in between. In Amina’s case, the tissue died, leaving a hole between her bladder and vagina, known as a fistula.
In all the years she hid, Amina never knew that her condition was treatable, or that her plight was shared by an estimated 400,000 to 800,000 Nigerian women and more than 2 million women worldwide.
Fistula is unknown in modern times in the West. Yet it is a quiet scourge in Africa. More than a decade after the Millennium Development Goals put maternal health under the spotlight, fistula remains a symptom and a symbol of poor obstetric care and the low status of women.
Without surgery, fistula sufferers leak urine and even feces. Often they are shunned by their communities. In some cases, nerve damage causes dropfoot, leaving the woman barely able to walk.
Like many sufferers, Amina was abandoned by her husband. But finally she got a break: after suffering for 16 years, she recently heard about another woman, Nana, who had had her own fistula repaired in a hospital ward run by the aid group Medecins Sans Frontieres in Jahun, a town in the neighboring state of Jigawa. Amina is now awaiting repair surgery, which gives her a chance at returning to a normal life.
“It’s a terrible situation, because when you cannot control your urine or your feces, everyone can see it,” said Kees Waaldijk, 69, a Dutch surgeon regarded as Nigeria’s fistula guru. “Anybody can see it; it smells. But with proper surgery, they get a second chance at life.”
The overwhelming reason for the high rate of fistula in sub-Saharan Africa is the poor obstetric care. Where an American woman can typically have an emergency Caesarean section or vacuum suction within several hours, a rural Nigerian woman might need more than a day to reach a hospital and then wait another day to be treated.
One in 18 Nigerian women dies in childbirth compared with one in 4,800 in the United States.
Waaldijk estimates northern Nigeria needs 1,750 functioning obstetric units. Asked how many there are now, he said: “I don’t think any of them are working. It’s a failed system.”
Culture is also a factor. In the Muslim north, marriage is common for girls as young as 13. Half of rural Nigerian women marry before 18 — a contributor to the incidence of fistula and maternal death.
Generally, a woman’s status in rural Jigawa rests on her ability to bear children. Giving birth at home, without medical intervention, is regarded as a sign of strength.
A woman normally needs her husband’s or perhaps mother-in-law’s permission to go to hospital — a decision-making convolution that causes further delays in an emergency. She also needs her husband’s permission to have a C-section.
One morning during GlobalPost’s visit to the Jahun hospital, a baby died in the womb because the doctors were unable to find her husband in time to get his permission for a C-section. He had dropped his wife at the hospital and then left again. She also suffered a ruptured uterus and needed a double tubal ligation, meaning she will never again be able to have children.
As well as opening its fistula ward in 2008, MSF runs a maternity ward and an outreach program encouraging women in the region to give birth in hospital instead of at home, to prevent fistulas happening in the first place.
Co-operation with the local health ministry is yielding progress: Sadiya, 16, for example, came to the hospital after spending two days in labor in her village. Her baby daughter survived and Sadiya will probably escape fistula.
“If I hadn’t come, I would have suffered much more and the end result would have been death — for both of us,” she said.
For those already afflicted, Medecins Sans Frontieres surgeon Said Abubakar reconstructs the vaginal walls using whatever tissue is available — sometimes even the outer labia.
The patient is strapped into stirrups, her hips elevated above her head, and given a spinal anaesthetic while Abubakar operates directly through the vagina. Making a woman continent again may come at the expense of narrowing the vagina such that sex, let alone child birth, will be impossible — a dilemma Abubakar must often explain to patients.
The operation is often described as simple but in fact it is an art form, with every case different, specialists say.
“I was chief trauma surgeon for many years in a clinic in Germany,” explained Dutchman Waaldijk. “I’ve been a war surgeon in Cambodia and I’ve done reconstructive surgery on leprosy patients, and believe me, fistula is the most difficult surgery I’ve ever encountered in my life. It’s like operating on the sole of a foot through the top of a high boot.”
Not all of Medecins Sans Frontieres’ cases have been caused by obstructed labour. Nana, 16, was subjected to the traditional practice of gishiri. A year ago, the back wall of her vagina was sliced apart — without sterilization or anaesthetic — to enlarge it to her husband’s satisfaction. The man who did the cutting, known as a Wanzami, or “barber,” cut too deeply and went right through to her rectum.
“I had no choice,” Nana said. “My husband … wasn’t happy with the way I was doing sex.”
There are enough sad tales to fill a book, yet the 32-bed ward is a surprisingly bright and upbeat place where women float around, catheters protruding from beneath their brightly coloured traditional dresses. Music and dancing is a major part of their rehabilitation and therapy.
The idea is eventually to hand the project over to the Jigawa state government, possibly in three to four years, with a well-trained staff. Nigerian state and federal governments’ progress has been, “in one word, slow,” said MSF’s medical adviser on women’s health, Bronwyn Hale.
There are individual instances of progress. But ahead of April elections, issues like fighting corruption and improving air cleanliness dominate the agenda — maternal health hasn’t rated much mention.
Representative Carolyn Maloney (D-N.Y.) has been pushing the issue in the U.S. Congress, but for most part maternal health advocates feel the issue has been shamefully neglected.
“Every year 500,000 women die ... in childbirth — that’s more than died in the (Boxing Day) tsunami and yet no one is doing anything about it,” said Dr. Catherine Hamlin, an Australian-born gynaecologist and pioneer in fistula repair who set up a clinic in Ethiopia in 1959 and has worked there ever since. “These are young women with their whole lives ahead of them and they die in labor or they get a fistula, in which case they wish they’d died. It’s a terrible thing to happen to a woman to be incontinent with her body waste.”
Rural African women remained “second-class citizens,” she said.
The last fistula treatment center in the U.S. closed in 1859. It was in New York, on the site now occupied by the Waldorf-Astoria. Ironically, the average cost of a room today — between $300 and $400 — is the same as the cost of a fistula repair operation in Nigeria.
“I don’t think any patient is more grateful than a fistula patient,” said Dr. Hamlin. “It’s marvellous to see that joy. It’s like a new life starting again.”