Obstetric Fistula is the worst thing you’ve never heard of
Obstetric fistula is a problem that has touched all of us, even if we don’t know it. It’s an incredible shame and injustice that this tragedy still happens and that so few people have ever heard of it.
Imagine giving birth without any medical support.
No doctors. No midwives. No medicine. No running water or electricity. It’s almost unimaginable. Until the advent of modern obstetric care, especially c-section, birth destroyed lives. It killed countless numbers of mothers and babies. And those others who survived with injuries such as fistula, lived ruined lives.
Bad things happen. Bad things like obstetric fistula.
What is Obstetric Fistula?
Obstetric Fistula is an injury that happens when quality c-section is unavailable
“OBSTETRIC” = childbirth-related
“FISTULA” = unnatural connection
So, exactly speaking, obstetric fistula is an unnatural connection related to childbirth. Days of unrelieved labor create compression, cutting off blood supply to the baby and to the mother’s internal soft tissue, causing both to die. The dead tissue results in holes (fistula) in the walls separating the woman’s reproductive and excretory systems. So after losing her baby, a woman must live with a never-ending flow of urine and/or feces that destroys her life.
The Modern Day Leper
The smell of an uncontrollable and unending flow of waste would obviously have some terrible social implications. For a woman or a girl with fistula, a lack of understanding of the condition has dire consequences.
Her community will nearly always ostracize her. In many cases, her husband will leave her or send her back to her family, though some men stay. In the worst cases, even her family will abandon her, leaving her to fend for herself. The bright eyes and big smile that she once had are replaced by the pain and loneliness that only a leper can know.
You can dramatically change a life today
is a problem as old as time.
The oldest evidence of obstetric fistula can be found in the mummified remains of Queen Henhenit, the wife of Egypt’s ruler around 2050 BCE
Chances are you have a direct relative who faced the trauma of obstetric fistula
The history books are full of maternal death and infant mortality. There are also numerous accounts of women suffering with fistula. Women who lived as pariahs in their communities, desperate for a cure of a fate “worse than death.” If you go back far enough in your family tree, you are sure to find fistula.
Three slaves and a US surgeon developed a miracle cure in 1852
A cure for fistula was discovered in 1852 by James Marion Sims, a physician in Alabama, who is widely considered the father of modern gynecology. Sims operated on Anarcha, Lucy and Betsey, three slaves with fistula who should be considered the mothers of modern gynecology. After numerous attempts, he perfected the operation and it remains virtually the same today.
The first fistula hospital sat on the grounds of the modern day Waldorf Astoria.
Sims founded a hospital dedicated to the miracle cure. Women came from around the world to be cured of fistula at the New York Women’s Hospital, currently the site of the Waldorf Astoria Hotel in New York City. The hospital closed long ago because improved systems made fistula extremely rare in the USA.
is still a problem in the world today
Get Fistula Every Year
Get Treated Every Year
The continued existence of Obstetric Fistula is among the world’s greatest injustices
The women who suffer from fistula are predominantly young, poor and underprivileged, and usually face the compounded grief of losing their babies as well as rejection from their families and communities – sentencing them to a life of destitution.
Developed nations have eradicated fistula thanks to emergency obstetric care (principally, c-section). Astoundingly, over 1 million women still suffer from this preventable and curable condition. Estimates of new cases vary wildly, but it is likely that an additional 100,000 women suffer from fistula every year.
While the world has known how to treat and prevent obstetric fistula for more than 150 years, 99% of people who experience this injury will never know its cure.
“Injustice anywhere is a threat to justice everywhere.”
– Dr. Martin Luther King Jr.
Fistula is not only a great injustice
Fistula might be the biggest opportunity in global health.
Fistula destroys lives. A simple surgery can bring a woman back from a fate many consider worse than death. Fistula is also an indictor of gender inequity and systemic failure. Treating it in a data-rich way can guide targeted investment into systemic improvement that can affect millions.
Fistula receives very little attention from philanthropy. Funding is virtually non-existent, representing 0.07% of annual global health funding. Awareness of fistula is limited because the problem is very rare in the US and Europe. The result: 99% of women who get fistula will never have a chance at treatment.
Fistula offers a unique opportunity to end a terrible injustice. Around 1 million women have fistula and the number of new cases is declining as systems improve. These relatively small numbers mean we can eradicate fistula within several decades. We have a plan to end fistula by 2045.
We built a tool to transform fistula care.
The global obstetric fistula electronic registry, or GOFER for short, is poised to ignite a quality-focused revolution in the fistula world
A devastating injury that destroys lives
Caused by Systemic Failure
While there are a host of contributing factors, fistula is caused most directly when a mother is in desperate need of a c-section that she will never get. Before modern obstetrics, fistula plagued the US and Europe.
A Sign of Gender Inequity
Fistula is a clear sign of gender inequity in that it only happens where systems are failing women and girls. Understanding exactly how fistula occurred can help us better target the injustice that caused fistula to happen in the first place.
A high impact and cost-effective surgery
Fistula is one of the world’s highest burden disabilities as quantified by the Institute for Health Metrics and Evaluation. But there is a solution to this misery. Dr. James Marion Sims developed a surgical repair technique in the 1850s. This surgery is still more than 90% effective and can take as little as 45 minutes.
As cost-effective as vaccines
In our pilot program, we treated 752 women and averted 7,956 DALYs. In other words, every woman we treated gained back, on average, nearly 11 years of healthy life that would otherwise have been lost to living with fistula. Our cost to avert these DALYs made fistula surgery as cost-effective as vaccines.
Download Our Pilot Report
Learn more about how we are changing the funding model in fistula and challenging the funding paradigm of global health.
Obstetric Fistula in the words of…
” Many of these girls, some as young as 13, struggle with labor for days without medical assistance and usually deliver a stillborn.
But that is just the beginning of their nightmare, because the trauma of labor rips apart their insides, leaving these girls to drip a constant stream of urine that follows them wherever they go.
They develop an internal hole called a fistula. And no matter how hard they try to stay clean, they smell of waste.
Most become social outcasts and are abandoned by their husbands, families and villages. Often believing that there is no cure, they’re then left to live alone in despair for the rest of their lives. “
– Oprah Winfrey Show, January 16, 2004
” Perhaps the most wretched people on this planet are those suffering obstetric fistulas.
This is a childbirth injury, often suffered by a teenager in Africa or Asia whose pelvis is not fully grown. She suffers obstructed labor, has no access to a C-section, and endures internal injuries that leave her incontinent — steadily trickling urine and sometimes feces through her vagina.
She stinks. She becomes a pariah. She is typically abandoned by her husband and forced to live by herself on the edge of her village. She is scorned, bewildered, humiliated and desolate, often feeling cursed by God.”
New York Times column “New Life for the Pariahs” on October 31, 2009
…Dr. Abraham Verghese
” An unspeakable scent of decay, putrefaction, and something else for which words remain to be invented reached our nostrils.
I saw no point in holding my breath or pinching my nose because the foulness invaded instantly, coloring our insides like a drop of India ink in a cup of water.
In a way that children understand their own, we knew her to be innocent of her terrible, overpowering odor. It was of her, but it wasn’t hers.
Worse than the odor (since she must have lived with it for more than a few days) was to see her face in the knowledge of how it repulsed and revolted others. “
Excerpt from Cutting For Stone