March 11, 2004

Instead of comforting her over the loss of her child, a woman with fistula is often ostracized by her family even though the disease is treatable, reports Zofeen Ebrahim

“I begged him to spend a little on me and get my problem fixed but he went ahead and got married,” says Jannat Dhani Baksh, who fell from grace when she developed obstetric fistulae. She became no less than a servant in her own home after almost 18 years when her husband remarried. The alternative her husband gave her was to go back to her parents’ home.

Obstetric fistulae is “an entirely preventable condition,” says Dr Sadiqua N. Jafarey, president of the National Committee for Maternal Health (NCMH) and professor of obstetrics and gynaecology at Ziauddin Medical University, Karachi. “It is the consequence of a difficult, obstructed labour which can be prevented by good obstetric care.” The UNFPA terms it the most devastating of all pregnancy-related disabilities, affecting tens of thousands of girls and women in South Asia.

Jannat was only 13 when she got married, and her underdeveloped body was not quite prepared for the rigours of childbirth. Coupled with that was a prolonged labour, loss of her child and rupture of her internal tissue.

Drawing a diagram, Dr Shershah Syed, associate professor, obstetrics and gynaecology at Dow Medical College, Karachi, explains: “During prolonged labour, the baby’s head puts pressure on the lining of the vagina, sometimes this pierces a hole in the wall of the rectum and bladder. With the result that the woman is unable to control her excretory functions and the urine and feces constantly drip out of her.”

For years Jannat laboured like a slave, keeping to herself, taking care of the second wife’s two sons and at the same time trying to deal with the trauma of living a life filled with shame, stench and loneliness. “He’d not even eat the food I made,” she says, referring to her husband. If only women would receive emergency obstetric care, they would not have to resort to so much indignity.

When her husband’s second wife died of cancer a year ago, he decided to get Jannat’s fistula repaired. “Today I tell my husband that it is I who stuck by him. He needs me to take care of our home and his sons,” she says, beaming proudly.

According to Dr Jafarey, “Prevention is as important. For that it is necessary to spread the message and create awareness in the community about the risks of obstructed labour especially in teenage pregnancies. The need for seeking expert care if there is undue delay in delivery, the availability of and accessibility to skilled attendants, and quality obstetric services are mandatory.”

“If you had seen me a couple of years ago, you’d not have recognized me,” says Jannat, smiling gleefully as she adjusts her colourful dupatta. “I was a depressed and despondent person. I had even contemplated suicide.”

Today Jannat is happy to have redeemed her lost status and revived all her social contacts. She has brought a couple of women who were also suffering from the same ailment to the taluka hospital in Shahdadpur, and sought treatment proving that it is preventable.

Dr Syed is convinced that 95 per cent of cases can be treated. Yet women continue to suffer as they cannot afford the treatment, or do not know that the fistula can be repaired. Dr Jafarey adds, “If not prevented, at least early diagnosis of obstructed labour and appropriate management of the emergency will prevent bladder and rectal injuries.”

Sughra, 23, wants to end her life. Lying motionless on a bed in Qatar General Hospital’s gynaecology ward, only traces of her despair can be gauged by the silent tears trickling down her eyes. “I clean her all the time, but the nurses still scold me and say she stinks,” says her aging mother as she wipes away the tears from her daughter. With her haemoglobin down to four and having lost the only child she was able to conceive after 10 years, and an ailment that is giving her mother sleepless nights, Sughra thinks it’s simpler if she dies.

The doctors tell her of Fatima’s success story who was also sent back to her parents when she developed fistula. A traditional birth attendant had delivered her first baby who died at ten months of age and she developed vesico-vaginal fistula. Luckily Fatima was repaired a year ago at a fistula repair camp and she went back to live with her husband. Doctors advised her parents to come to the hospital if she ever became pregnant again.

This was duly done. Full term pregnant Fatima travelled by bus for 14 hours from a small village near Jacobabad and within the next 12 hours a C-section was performed. She gave birth to a beautiful, healthy baby girl. “I’ve spent so much on her but it’s all been worth it,” says Fatima’s white-bearded father, Abdul Haq, a labourer, who has nine children. Her father intends to send her back to her husband once she’s gained enough strength.

And then there are people like Farida, who like Jannat and Sughra never got a chance to mourn the death of one of her twin daughters. “All I remember is being constantly busy — taking care of my two older children, sending them to school, doing the household chores, feeding the newborn, keeping myself clean and washing my soiled clothes. In between I’d get into these incessant bouts of crying. I hardly got time to mourn the death of the child I lost,” she says.

Rather than being comforted for the loss of her child, the woman with fistula is often rejected by her husband. Women who remain untreated not only face a life of shame and isolation, but may also face a slow, premature death from infection and kidney failure. While urinary infection is not a common problem in fistulae, according to Dr Jafarey, “If there is obstruction especially of the ureter due to fibrosis, the kidneys can be damaged resulting in early death. Premature death of the woman can also result due to electrolyte imbalance as a consequence of a certain type of urinary diversion surgery.”

For Nasreen, her greatest despair was not being able to say her prayers. “I would keep a cloth and keep changing that and would never venture out for fear of smelling bad.” Unlike so many others, she and her husband tried all treatments from the homeopath to even hakims and faith healers. “But after six years of agony I’m finally able to lead a normal life and hold the Holy Quran.”

Before Shah Harun got her fistula repaired, she would lie all day on a bed into which a big hole had been made under which a bucket was kept which would be emptied every now and then by one of her daughters. If it were not for her daughters, Shah Harun does not know how she could have survived the years.

“The incidence of fistula in Pakistan is not known. Most of the tertiary care government hospitals treat about 25-30 patients per year,” says Dr Jafarey. “These are of course only those cases that seek the help of hospitals” — and she suspects — “there would be many more who suffer silently at home.” According to WHO, an estimated three million women throughout the developing world continue to suffer from these injuries.

“The lack of good statistics indicates the nature of the problem,” said Dr Nafis Sadik, UNFPA special ambassador on fistula, at the first South Asia Conference for the Prevention and Treatment of Fistula, held in Dhaka, Bangladesh, December 2003.

The reasons why the problem persists are manifold — the sense of shame attached to the condition, the lack of decision-making power available to women in developing countries, and the absence of knowledge in these countries of a surgical cure.

The existing problem of fistulae can be tackled at a national level by having a team of trained dedicated personnel (surgeon, anaesthetist, nurse) who would travel all over the country and operate in camps.

Dr Syed learnt the technique of repairing fistula in Ethiopia from Dr Catherine Hamlin at Addis Ababa Fistula Hospital 10 years ago. Since then he has been advocating for emergency obstetric care. He, along with other like-minded doctors, organize a fistula repair camp in interior Sindh, in areas where they are informed that the condition is rampant.

He calls it a “disease of the poor”, of those women who are socially discriminated. He justifies it by asking: “Do you see women from Nawaz Sharif, Benazir Bhutto and Pervez Musharraf’s family suffering from this disease?”

But Dr Abdul Hakeem Jokhio, may have a point when he terms it “a disease of poor health provision.”

Yet renowned British gynaecologist Prof. John Kelly who has been joining Dr Syed and his team of doctors in the free camps every year, for the past five years, to supervise as well as perform surgeries, insists the complication is caused by obstructed labour.

Realizing the enormity of the problem, the Bangladesh government has recently announced that it will establish a National Fistula Centre (with assistance from UNFPA) to manage and train service providers. Asked if Pakistan is doing anything to tackle this problem at a national level, Dr Syed says, “There is no place for such women in Pakistan’s national health policy. As for Bangladesh, the government is active only because the money is coming from the UNFPA.”

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