“One Woman at a time. That is how we fight fistula. By restoring health and dignity to one. One woman with the will to survive. She is still waiting.” -The Fistula Foundation
Take time to learn one woman’s story
Once we have given birth to our first child we join a sisterhood of mothers. We can relate to each other in a way that only someone who has experienced the bodily changes of pregnancy and birth can. As beautiful and miraculous of a process pregnancy can be, our bodies have transformed in ways that introduce humility as only gestation can.
As mothers we seem to be able to speak about personal things we would never speak of to anyone else. Breastfeeding, leaking milk, hernias, incontinence, episiotomy, my fellow mothers, we have all been there in some way. We understand. Personally, I shared my experiences with other mothers along the way through my four pregnancies and births, and one miscarriage in between.
Obstetric Fistula is not a pleasant topic, and not one that we as mothers talk to each other about, but it is a mother’s topic, and because as mothers we are sisters, we need to talk about it.
Obstetric Fistula is a hole that has opened between the birth canal and the rectum or bladder that is caused by prolonged obstructed labor. This leaves the woman leaking feces, urine or both. In turn these women are ostracized from their communities due to the smell. Ninety percent of these women become depressed, can no longer care for their other children or work to help support their families.
Many times they do not even know what is wrong with them, or the exact cause of their affliction, they think they are cursed. In countries and societies where giving birth is a badge of honor, these women have little hope. Of all of the problems and challenges that women face in developing nations, Obstetric Fistula is a relatively easy problem to fix. With surgery women can go on to live normal productive lives.
Obstetric Fistula is a disease of poverty that currently affects more than 500,000 women around the world. 48% of women in Sub-Saharan Africa give birth without any medical help at all. In countries where malnutrition plays a part in developmental growth, girls are married and give birth at younger ages. Even in their 20’s, which is the most common age bracket of Obstetric Fistula, their pelvis may not be large enough to birth due to having grown up malnourished.
In places like America, Obstetric Fistula was almost entirely eliminated with the availability of emergency cesarean section surgery, so it is not a problem we hear much about. The mothers who are affected by it, may have also lost their baby due to days of labor and difficult childbirth. Imaging giving birth only to lose the baby, and become physically “broken” in the process?
Now think of the humility you felt going through uncomfortable bodily changes during your own pregnancy, and then imagine the shame that would come from being continually incontinent thereafter. The feeling of shame plays a large part in these women’s lives, yet this is such a hopeful issue.
Obstetric Fistula is preventable when timely emergency obstetric care is available, and it can be fixed with surgery.
While in New York City last week for the Social Good Summit with World Moms Blog, I was able to sit down with Kate Grant, the CEO of the Fistula Foundation, to hear about the hope that the Fistula Foundation is able to bring to these women through the services they help to fund. She explained to me that for only $450 dollars a woman’s life can be transformed. That amount is enough to cover restorative surgery and post-operative care.
“The difference between despair and restored dignity for a woman suffering with fistula is $450 dollars.”
The Fistula Foundation helps fund 42 sites in 19 countries around the world helping to transform these women’s lives. Not only the women are helped, but their children, who have suffered by witnessing their mother’s rejection, poverty and misery. The Fistula Foundation has trained vitally needed surgeons, nurses and anesthetists, and donated monetarily to fund fistula hospitals and projects worldwide. You just have to read about patients’ stories to see the way these women’s lives can be transformed by surgery.
A Fistula Foundation grantee partner, the Edna Adan Maternity Hospital in Somaliland, will be featured in a segment on Maternal Mortality night two of the documentary film Half The Sky: Turning Oppression into Opportunity for Women Worldwide [running October 1 and 2, 2012 on PBS in America]. Hopefully the movie, based on the book by Nicholas Kristof and Sheryl WuDunn, will heighten the awareness and with additional donations brought forth by this issue, more women suffering from Obstetric Fistula can be helped.
As mothers and sisters, we need to be able to talk about these things, the things that may not always be comfortable to talk about. Awareness can become action, which can transform lives.
Thank you for highlighting this cause, Elizabeth! It pains me to think how many lives have been lost and wasted because of a fixable physicality.
So interesting to read this today. I recently read Cutting For Stone by Abraham Verghese and that was the first time I’d heard of fistulas. So nice to hear about the Fistula Foundation, the work they are doing, and the increased awareness.
I loved that book, and remember the impact of the story of the girl with fistula in it. Very powerful, and I think it was the first time I had heard of it as well. It goes to show how powerful stories can be, even in a novel, to build awareness.
My first reaction was OUCH!!! 🙁
That said, I’m really happy to know that there are people out there willing to help these poor women!
I know, right? Not pleasant, and every woman can relate to how painful that must be!!
It is heartbreaking, but this is such a hopeful issue because with surgery the life of a woman can be transformed.
I first learned about fistula from the documentary “A Walk to Beautiful”. Since seeing this film I have become inspired by this cause and have followed the online rabbit hole so to speak to this blog and your post (amongst many other sites). I look forward to learning more and being a part of the solution for these women who suffer so needlessly. Thank you for your relevant post!
Emily, I have heard that this is a must see film, I am going to have to watch it, thank you for the reminder! I only hope to have done justice to the issue in this post, and am in awe of the work that the Fistula Foundation is doing to restore dignity to these women! Make sure to watch the second part of the documentary Half The Sky on PBS tonight (also being streamed on-line) where they highlight the issue of Fistula in one of the segments. I’ll be watching too.
Such a well written informative post on a tragic yet easily treatable problem. Thanks for sharing.
Thank you Nicole! Yes, of all of the variables that can spiral a woman and her children into a cycle of poverty this is one that can be resolved relatively easily.
Tears running. Great, informative post, Elizabeth. I’m so impressed that you arranged a meeting when in NYC with the CEO of the Fistula Foundation. Your motivation to help make a difference in the lives of women is outstanding.
I recorded last night’s Half the Sky show, and hope to watch that and this evening’s one tonight. Very powerful stuff. I hope World Moms Blog will continue to help solve problems and use our social media presence to make the lives of people better!
Jen, thank you so much for your kind words. As the founder of World Moms Blog you have created an incredible platform for the women of the world to share their experiences and create an understanding of each other, and our various cultures. Kudos to you for giving us all this space.
Have your tissues by your side when you watch and prpare to be inspired! I’m looking forward to the second half of the show tonight.
Elizabeth, how relevant to the interview I just did with Andi Gitow, Senior TV Producer at the UN. She also was talking about assignments that involved maternal mortality and complications. She asked if I knew what Fistula was and, thanks to your post, I was able to reference its immediate relevance on World Moms Blog. (not to mention that I also was moved and inspired by Edna Adan and Half the Sky over the past two nights).
Thanks for bringing this topic and these important pieces to a greater audience through your post!
Kyla, the timing was perfect then! I am so glad to know! I am amazed by Edna Adan! It made me want to become a birthing doula so I could get out there and really help people!
What a truly horrendous situation for these women to live in. So good to be aware of the circumstances with which others live – even the distressing situations such as these. Thanks for sharing this information.
Hi, thanks for your story. I’d just like to correct your comment “In places like America, Obstetric Fistula was almost entirely eliminated with the availability of emergency cesarean section surgery, so it is not a problem we hear much about”.
This is incorrect, in fact the numbers of women from developed countries who suffer from obstetric fistula is huge, you just don’t hear about it for the same reasons you don’t hear about the women in Africa. These women are ashamed of the conditions they find themselves in, smelling of faeces or urine, incontinent and unable to work or care for their children. I am from Australia and I suffered a vesico-vaginal fistula (opening between bladder and vagina) after undergoing an emergency c-section (thats another fallacy, that you can’t get an obs fistula from a c-section, it’s just not true).
I was lucky there was a well known, Hamlin trained surgeon in Brisbane and I was repaired first go. However I continue to suffer major problems with my bladder and pelvic region. I thought I was the only one who suffered until I found ‘Living with Obstetric fistula’ on Facebook and a whole new world opened up. We are swamped with ladies like me with obstetric fistulas: UK, Canada, Australia and America which has the highest sufferers.. I started up http://www.operationhopefistula.com to EMPOWER-EDUCATE-ERADICATE both sufferers and doctors.
You see the thing is this: incontinence is incontinence no matter where you live in the world and it has no borders. Women in developed countries are worse off because we have few doctors who are trained to surgically repair a fistula – many will try (and indeed one lady in our group has had 18 surgical attempts by inept Surgeons) but they do not have the required obstetric fistula training. Many have to fly to another country or halfway around the world to see a fistula surgeon.. they wear stoma bags, they cannot work or look after their kids and in the UK and USA, where healthcare is appalling, they are lucky if they even get to see a surgeon who knows what a fistula is…
And what is even worse is that the majority of these women are told by doctors that they don’t have a fistula ‘because they don’t live in Africa’ and wont even examine them.. some give up and live with incontinence…
I aim to take this to the UN and make a documentary…www.operationhopefistula.com
Thank you for your comment and for your story. Obstetric fistula is a very difficult, preventable health concern that no women should have to live with, no matter where they live!
Thanks Jan, appreciated <3
Gaby, First I want to say how sorry I am that you have been through so much, and how commendable it is that you are turning your experience into a way to help others. I am sure they are incredibly grateful for the guidance and community that you have provided.
Secondly, thank you so much for extending the dialogue to reflect the issue in the developed world as well. I had no idea, and based on the information I had gathered to write the piece, and as you said, it is not publicly discussed as an issue of developed nations.
I knew there is a shortage of surgeons specifically trained to deal with Obstetric Fistula, but thought that meant not enough to send around the world to the places that need them most. I did not realize that shortage of expertise existed here as well. I am grateful for you sharing your story and opening our understanding of this issue even wider. That is exactly what we aim to do here at World Moms Blog.
Hi Elizabeth, thanks for replying. Yes people are shocked when I tell them what do in my ‘spare time’ however I am putting my journalism degree to good use… let me know if you ever need any more info on the subject..cheers
Gaby, you’ve been in touch with Fistula Foundation before and it’s nice to come across you here on Elizabeth’s beautiful blog post.
At The Fistula Foundation we focus only on providing treatment to women in the developing world who don’t have access to the kind of quality maternal care offered in places like Australia or the US. But speaking strictly for myself, I wish we were a much, much larger organization that could help provide treatment for ALL women with fistula, everywhere, because you’re right: fistula was largely – but not completely – eradicated in developed countries, and no woman anywhere should have to suffer from this heartbreaking injury.
I’m so glad that women in the developed world who suffer from fistula have you to look to as a resource and source of hope. With an injury this devastating and heartbreaking, your voice is such an important one in letting women know they are not alone.
Keep up your wonderful work!
And Elizabeth – thank you again for this wonderful post, all of it was spot on. Thank you for helping to spread the word about obstetric fistula. The more people know about and understand the issue, the more we can all work to help all women suffering from fistula, wherever they may live!
All the best,
I was brought to tears watching “A Walk to Beautiful.” I had read about fistulas in Half the Sky, but the documentary put faces to the stories. Thanks to the Fistula Foundation for the miracle that it brings to these women’s lives. I live in the Chicago area and want to know what I can do to help this beautiful cause.
Two factors drove my decision to leave a promising career to focus on obstetric fistula: the shamefully low capacity to treat and the magnitude of change possible. With an established treatment mechanism successful 90% of the time, it seemed incomprehensible to me that only 10,000 of the more than 2 million plus women suffering have this condition corrected every year. I found this reality especially difficult to believe considering the terrible circumstance in which these women exist and the small cost necessary to dramatically transform their lives. I thought my training in optimization might be of use and committed myself to the cause.
That is a great effort to be involved in. That was my understanding, that this is such a hopeful issue because it is so treatable if the treatment is accessible. I know part of what The Fistula Foundation does is to provide training to surgeons in Obstetric Fistula, there apparently is a severe shortage in this expertise. I love to hear about all of the positive actions people like you and Gaby who commented above are taking to combat the issue! Fantastic. People like you really help to make the world a better place.
Great post. I pray that I will soon be able to support this cause. As an aspiring midwife, I am always looking for charities that support moms and babies, while in pregnancy or after.
I recently underwent a c-section and delivered a beautiful baby boy weighing 4.09kg. I immediately started experiencing wetness often n though in the beginning it was smelly with time it’s reduced to just colorless fluid that I suspect is urine. Am now slightly above four months since my baby was born and still experiencing the same. I have been treated for fungal infection n also in the beginning thought it was the postpartum lochia experiences that take place six weeks after birth duration. However reading through the comments here and expecially Gaby’s experience I believe I could be suffering from Vesico-vaginal fistula since mine was a c-section method of child birth. Am in Kenya and even though the plight of women living with this condition had been highlighted I would live any suggestions on how to go about it and or a doctor I could see to do thorough investigations on me going forward.
First congratulations on the birth of your baby boy! I hope he is thriving and doing well! I am sorry that you are facing some health problems. Here is the information for the fistula foundation in Kenya:
http://www.fistulafoundation.org/wherewehelp/kenya/ I hope they can help you find a solution. The good news is that if it is fistula, it can be fixed. I wish you all the best of luck and goodness for you and your baby boy! Please let us know if we can help with any other information.