Fighting fistula: Razia's brave recovery from pregnancy nightmare

Razia Shamshad
Image caption Razia says her pregnancy became her nightmare

In a remote village in central Pakistan a teenage girl is screaming for help in unbearable labour pain. There are no trained midwives or doctors around for miles in Rahim Yar Khan District in southern Punjab.

The only help at hand is the neighbourhood dai, or traditional birth attendant. She doesn't have the skills or the training to handle a complicated pregnancy.

Still, she gets on with what she knows best: pushing and pulling with her hands, as if trying to rearrange the insides of the young woman.

The pain becomes so severe, the woman, Razia Shamshad, loses consciousness.

Her ordeal drags on for about four days, at the end of which the dai manages to pull out the remains of what would have been a baby girl.

As if the trauma of losing her first child isn't enough, Razia is also left with chronic incontinence. But the dai tells her not to worry, saying "it's all going to be fine in due course".

Instead, Razia's condition worsens as she starts leaking faeces and urine from her vagina.

'Worse than being blind'

What she doesn't know is that her long and fruitless labour has caused obstetric fistula - preventable and treatable, but not if you live where she does.

"My clothes were constantly wet and filthy below the waist. I would smell all the time. I felt helpless," she says.

"Some neighbours and relatives despised me. Others made fun of me. They said I must have done something to deserve this."

Image copyright Getty Images
Image caption Two million women live with the condition globally, many of them not able to afford medical treatment

But Razia's only fault, it would seem, was that she was born into a poor family and with a genetic sight disorder.

As a visually impaired girl, in a country which prizes boys, she was never sent to school, even though she was smart enough to memorise the Koran at an early age.

When she became a teenager, Razia was married to a man she did not really know. But she soon became a young widow when her husband died in a road accident. At the time, she was six months pregnant with her first baby.

Living with an elderly father-in-law and with no professional antenatal care at hand, Razia's pregnancy became her nightmare. The traumatic episode left her in a condition she describes as "worse than being blind".

Obstetric fistula is little known in Europe and the US where it has been virtually wiped out because of improved obstetric care.

More on fistula

  • Occurs as a result of obstructed labour causing a hole in the bladder and/or bowel
  • Patient is constantly leaking urine and/or faeces
  • In most cases where it occurs, the baby dies during childbirth
  • Two million women living with the condition globally, mostly in sub-Saharan Africa and South Asia
  • Up to 100,000 new cases globally each year
  • Condition is entirely preventable and treatable

The 'cursed' women living in shame

Fistula in Uganda

But an estimated two million women around the world still suffer from the devastating impact of this condition. Many of them belong to the most marginalised communities in sub-Saharan Africa and South Asia.

Poorest affected

Pakistan has one of the worst maternal mortality rates in the region and its public health care suffers from deep-rooted corruption and institutional inefficiencies.

Growing income disparities mean few can afford costly private health services in urban areas, while many rural poor, especially in Sindh and Balochistan provinces, can't even access basic health services.

"Obstetric fistula is a condition which affects the poorest of the poor women with limited or no access to basic health care and education," points out Dr Sajjad Siddiqui, Pakistan project manager for the global End Fistula Campaign.

Image caption Dr Sajjad Siddiqui says it is the poorest of women who are most affected by fistula

And because the patients are usually without a voice and out of sight, no-one cares about them, he says.

In recent years, Pakistan has reported up to 5,000 new obstetric fistula patients annually. The number is based on women who sought help or somehow came in contact with Dr Siddiqui and his team at the seven free fistula treatment centres set up by the UN Population Fund.

Many more go on suffering quietly in shame - for years, sometimes decades - not knowing that the condition is treatable through surgery, say experts.

Thoughts of suicide

That was the case with Razia who went through the pain and humiliation that comes with vesicovaginal and rectovaginal fistula.

Ostracised and stigmatised, the choice before her was to die a lonely miserable death in the village, or seek help.

"I thought of committing suicide, but something always prevented me," she says. "I guess I never fully gave up hope."

So, one day, despite her visual impairment and incontinence, Razia - all alone - left her village and took the long train journey south to the port city of Karachi.

Image copyright Getty Images
Image caption Razia being treated at Koohi Goth hospital

Here, she was lucky to end up somehow at the country's National Fistula Centre at Koohi Goth charity hospital.

"Razia's was a particularly difficult case, given what she had been through," says Dr Shershah Syed, who has spent nearly two decades treating fistula patients all over the country.

"But I was struck by her courage and resilience and took her in as a challenge."

Over the next several months, Razia was cared for and offered free treatment at the hospital. And after a series of operations, she started to get her life back and reintegrate herself back into the community.

Along the way, she remarried. And when her doctors made it clear to the couple that she would never be able to conceive again, she adopted a girl from her extended family.

'So happy now'

But earlier this year, she once again defied the odds and surprised herself and her doctors when it turned out she was pregnant.

"We couldn't believe it! It's extremely rare for a woman with her complications to conceive again. And yet she did it," says Dr Syed.

This time, Razia received the antenatal care she deserved and through a caesarean section gave birth prematurely to a baby girl.

"I am so happy now. This little bundle of joy has made me forget all my pain and suffering," she says.

Image caption Razia with her husband, adopted daughter and newborn baby

Razia now lives in Karachi with her new husband, a handyman/painter, her adopted daughter and her newborn baby.

Still, she worries about thousands of other women suffering from the condition.

As a fistula survivor, every now and then she volunteers at Koohi Goth Hospital to encourage other women to take charge of their lives. "Never give up hope," she tells them.

However, despite individual successes, what's really worrying Pakistan's small group of fistula experts is the rise in the reported cases of iatrogenic fistula.

This kind of injury is caused by the negligence of health practitioners while performing hysterectomies and caesarean sections. The victims are usually mature women being operated on by unqualified and untrained health practitioners.

"This is becoming a bigger concern for us," says Dr Siddiqui. "We are now seeing nearly as many cases of iatrogenic fistula as obstetric fistula.

"That's just shameful. It shows that there are plenty of doctors out there doing more harm than good and they aren't being held accountable."

Image caption Razia talked about surviving fistula at an international fistula conference in Geneva in May 2015. It is the only time she has ever flown out of Pakistan

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