Campaign to End Fistula with special focus on Ethiopia – A walk to beautiful 1 Is there a role for ultrasound?
2013; Wiley; Volume: 16; Issue: 2 Linguagem: Inglês
10.1002/j.2205-0140.2013.tb00165.x
ISSN2205-0140
Autores Tópico(s)Urological Disorders and Treatments
ResumoYoung Mother by Christian Pállson Nolsøe Yea, though I walk through the valley of the shadow of death… Psalm 23,4 (King David of Israel 1000–970 BC) "In an unequal world, these women are the most unequal among unequals"2 A scourge from time long past that we thought removed from the surface of the earth has affected humanity again, or more correctly, part of humanity. A misery so all-embracing that it is incomprehensible to people of the Western world is everyday reality for hundreds of thousands of young women in Africa and other parts of the developing world. A disease by the somewhat strange name of obstetric fistula (OF), also known as rectovaginal or vesicovaginal fistula,1 afflicts more than two million women in low-resource countries and the most remote parts of the world, while at the same time is totally absent in high-income countries.3 A fistula by definition is a false exit from cavities or tubular structures inside the body to the outside world or in-between internal structures that arises due to disease or physical damage. An obstetrical fistula is either a connection between the rectum and the vagina that allows stool to pass unhindered or a connection betwen the urinary bladder and the vagina that allows urine to pass. The term 'obstetric' derives from the fact that these fistulae are caused by tissue damage due to prolonged labour. To the vast majority in the West it is not even known. However, anyone who has ever visited a medical history museum will probably recall the horror by which one was struck when observing the instruments used for cutting up the (almost always dead) fetus in case of obstructed labour, and with little doubt, at the same occasion thought these doctors must have been some kind of monsters. Little did we know that the condition which called for the use of these cruel instruments still exists and affects thousands of birth-giving women, mainly in Sub-Saharan Africa and South Asia every day. Only the instruments, luckily, are no longer in use, but neither is the modern alternative available in these parts of the world. This very, very unlucky scenario causes the unbelievable suffering of millions of women through the complications of OF. Of course today in the West, treatment would involve the timely help of a midwife and, if necessary, a caesarian section performed by an obstetrical surgeon. With this prologue, I wish to emphasise that being a young girl or an adolescent woman living in rural areas of contemporary Africa may very likely mean exposure to several forms of negative discrimination that inevitably decreases odds for leading a prosperous and happy life. Obstetric fistula especially afflicts impoverished girls and women living in remote regions without adequate medical services. Affecting the most powerless members of society, it touches issues related to reproductive health and rights, gender equality, poverty and adolescence. Obstetric fistula2 is a classic example of how gender discrimination may manifest itself in Africa and this has become especially evident in Ethiopia through the fantastic work done at the Addis Ababa Fistula Hospital. In other words, the scope of this article is OF in general and how this can be viewed from an Ethiopian angle in particular. This is also an excellent opportunity to showcase discrimination due to lack of education, funding and personal empowerment in the local community and how this may come to play a crucial role in very real situations. This inequity is evident in many aspects of daily life and influences vital areas such as economy, age, religion and above all gender. I hope with this article to present the problem, describe the major players as I see them, the actions and efforts they engage in and finally to analyse and discuss the future. I will build my case with an emphasis on the work of Reginald and Catherine Hamlin as it is told by themselves and reported and communicated in various ways by others. Their efforts jumpstarted the fight against OF. It took 40 years – so perhaps "tumble-started" would be the more correct metaphoric term. I believe a historical overview is necessary to understand the present status but in realisation of the vastness of the subject I have chosen to limit the scope of this synopsis to cover merely a few of the many international aid organisations and non government orgainisations (NGOs) that are actively participating in the process today. Undoubtedly, one of the biggest and most influential organisations involved is the United Nation Population Fund (UNFPA) whose Campaign to End Fistula launched in 2003 is at the problem's coalface. Just to give an idea of the scale of this humanitarian effort the list of partners and sponsors involved −89 in total – can be found at http://www.endfistula.org/public/pid/7439. It is of course impossible even to list the achievements of all these players, however, aside from UNFPA I will to some extent involve in the analysis efforts made by organisations and institutions such as the Hamlin Fistula International and Addis Ababa Fistula Hospital, The Fistula Foundation and the Worldwide Fistula Fund. Of all the morbid conditions that can befall a woman following labour, suffering an OF is one of the most debilitating and devastating. In describing the terrible consequences of the condition Catherine Hamlin in her autobiography The Hospital by The River4 gives a heartbreaking insight into the life and fate of one victim of OF in the remote northern region of Ethiopia: "Ambaye visited several villages on an outreach trip to Gondar. In one, she and the team were led to a dilapidated hut away from the others. The whole structure was leaning to one side and looked as though it was about to collapse. Inside, crouched in the dark, downcast and listless, was a young woman, Anawa. She told them she had been married at 12 and was pregnant at 13. After a long labour her child was born dead, and she was left with a double fistula, incontinent of urine and bowel contents. 'What about your husband?' enquired Ambaye. Tears welled up and trickled down her cheeks. 'He destroyed me and then he left'. Amawa's mother looked after her until she sadly died, leaving her daughter to endure her affliction alone. She had been told there was a hospital in Addis Ababa where she could be cured, but she did not have the bus fare. When the outreach team found her she had been in this condition for 12 years. They arranged for her to go to a local hospital where Ambaye operated successfully." p 257 Amawa is a typical OF patient. She is pregnant before her body and pelvic bones are fully developed. She is poor and lives in rural Ethiopia, many kilometers and days of travel by bus away from qualified obstetric service. Obstetric fistula is a complication of obstructed labour, an unfortunate condition that occurs in 5% of live births and is one of the major causes of maternal mortality and morbidity. For every maternal death it is estimated that 20 women suffer damage due to complications of obstructed labour and of these OF is one of the most common and certainly most dreaded injuries. Obstetric fistula is a hole in the birth canal caused by damage to the walls of the vagina when the presenting part of the baby, usually the head, causes the soft tissues to be impacted and compressed towards the mother's pelvic bones. This results in critical decrease in blood supply, leading eventually to tissue necrosis and subsequently an opening to adjacent organs, i.e. fistula formation. Most frequently the hole is between the vagina and the urinary bladder i.e. a vesicovaginal fistula but it can also form between the vagina and the rectum in which case a rectovaginal fistula is the result. In both instances the contents of the organ will unfortunately flow unhindered to the vagina and involuntarily to the outside world. This of course results in the most offensive, humiliating but also uncontrollable odour being emitted. The continuous urinary and/or faecal dribbling excoriates the adjacent genital areas resulting in painful rashes and skin wounds. Often this constant leaking and unbearable stench is confused with venereal disease or interpreted by the village people as punishment from the gods for misbehavior or adultery on the woman's part, and soon she may find herself abandoned by her husband and rejected by her community. As if this was not enough suffering, the woman also finds herself mourning the loss of her baby because in most of these cases the child is stillborn, even worse she may never bear another child. Her condition very often prevents sexual relationship and even if her husband was still interested she may often experience inability to become pregnant due to vaginal damage or amenorrhea. It is crucial to notice that obstructed labour always ends! In rural Africa obstructed labour may often result in death or significant physical damage to the mother, her baby – or both. Furthermore when the mother survives obstructed labour only to develop an OF, statistically the baby is stillborn in more than 90% of cases.5 Most OF occur among women living in poverty in cultures where a woman's status and self-esteem may depend almost entirely on her marriage and ability to bear children. Despite this withering impact on the lives of thousands of girls and young women OF has largely been neglected, even in the parts of the world where it is most frequent. It is estimated that two to three million young women live with untreated OF in sub-Saharan Africa and South Asia and each year, between 50,000 to 100,000 new women worldwide develop OF.6–8 A simple calculation can tell us that at the world's current capacity to repair fistula, it would take at least 200 years to clear the backlog of patients, provided that there are no more new cases. However, in the face of 100,000 new cases per year, the reality is that the need for treatment of OF will never be met at the present pace. On the contrary, numbers will keep increasing. Looking at Ethiopia solely, the numbers do not present a more optimistic scenario. Ethiopia has a population of more than 85 million and estimated three million births per year and is one of the poorest countries of the world with five physicians and two midwives per 100,000. Information from UNFPA. Available at http://www.unfpa.org/sowmy/resources/docs/country_info/profile/en_Ethiopia_SoWMy_Profile.pdf Accessed 11th January 2013. By comparison these figures for Denmark are 5.6 million population, 60,000 births and 366 physicians per 100,000. In Ethiopia3 alone an estimated 100,000 women need OF surgery and every year about 8900 new cases are added. This means even with a reported surgical capacity of 2500 patients per year at Addis Ababa Fistula Hospital, the world's largest fistula-only-facility, the outlook is bleak and in essence 6400 new cases are added to the backlog each year. However, those patients who make it to this Hamlin-founded facility or an equally successful hospital where OF repair is performed can expect a more than 90% cure rate.9 Tragically, the cost of saving the lives of one of these abysmally poor women by a surgical fistula repair is stunningly low by Western standards. At reported rates of $300–600 in different places in Africa, this would not cause any considerable trouble for most people in Europe, and actually, in most places both surgery and all additional costs of the fistula hospital are covered by charity funding from government programs or NGOs. However, in most cases speculation over the cost of the surgical treatment itself is not what prevents the OF patients from seeking help. Foremost, this is caused by something as banal as lack of knowledge. Patients or rural people in general simply do not know the condition can be cured and when they find out the next insurmountable obstacle is another, to westerners seemingly, very simple problem: How do we get there? The nearest road in many places in Ethiopia and the rest of rural Africa the may be one or two days' walk and after that there are hours and maybe days by bus to the fistula facility. But the biggest hindrance may actually be the bus fare! In the meantime, women who experience this, theoretically speaking, both preventable and curable condition continue to suffer constant incontinence which often leads to social isolation, skin infections, kidney disorders and even death if left untreated. Leading life as social outcasts, these women rely on begging or the random mercy of relatives and friends. Even in the event of a successful operation, their social status may still be threatened and since many have been abandoned by their husbands or divorced, an OF treatment program will have to include social and socioeconomic rehabilitation in order to be truly successful. In other words the operated women should receive some kind of work training, education or employment opportunity, and not just sent off home. Obstetric fistula can almost completely be avoided by delaying the age of first pregnancy till the bony structure of the girl is mature and by timely access to quality obstetric care including educated attendance at birth and availability of emergency cesarean section when obstructed labour cannot be relieved by vaginal birth. In addition, general improvement of nutritional status and education will both greatly enhance the odds for an uncomplicated pregnancy and labour. Because OF affects some of the most marginalised groups in society i.e. young, poor and uneducated or even illiterate girls and adolescent women in rural areas and remote parts of Africa and South Asia, it has remained a more or less 'hidden' condition. And hidden they have been, these miserable women have been hidden by their family and neighbors because of the smell and perhaps the fear of bewitchment, hidden by themselves out of shame and hidden by the international medical community due to negligence. Thankfully, they are not as hidden anymore. An increasing number of newly launched initiatives are published and broadcasted on different media. One such initiative is a short documentary movie with the title Hidden no longer. This film tells the story of four women from French speaking countries in Western Africa and is part of the United Nation Population Funds Campaign to End Fistula. It can be accessed online at http://www.endfistula.org/public/pid/7447_feedEntryId=24552.10 If you have the attention of the UN you are truly hidden no longer. And if they dedicate an entire campaign to your purpose alone and to help cure your ailment exclusively, other people may think you walk in the light. Happily, the problem of OF is hidden no longer. It is strange how a condition can be totally erased from the collective memory just because it no longer occurs in one's own backyard. No more than 150 years ago, the curse of OF was equally frequent in the western world as it is today in countries like Ethiopia. However, it was eradicated from the list of diseases that threaten women of today's high-income societies due to general improvement in standard of life and in particular public health and modern obstetrical services. Today, OF is practically never encountered by medical professionals in the rich part of the world. This is probably also the reason why it has taken so long to mobilise anew the international medical community as well as international aid organisations and NGOs. However, what was started by Catherine and Reginald Hamlin back in Addis Ababa in the 1960s is now finally bearing fruit. The United Nations Population Fund in 2003 launched its Campaign to End Fistula initiative with an almost endless list of partners spread out over the world. In short the UNFPA's mission can be expressed as "to deliver a world where every pregnancy is wanted, every birth is safe and every young person's potential fulfilled". Thus, the Campaign to End Fistula appears to be naturally contained within the UNFPA's scope and is in accordance with the Millennium Development Goals (MDG) set up by their mother-organisation the UN itself, especially MDG 2: Promoting gender equality and empowering women and MDG 5 Improving maternal health. The campaign has succeeded in drawing attention to the issue of fistula on multiple levels11 and must continue to do so if the goal of ending fistula worldwide will be reached within a reasonable time, whatever that may be defined as. No doubt the task is big, very big, but the needs are even bigger. Fulfillment of the aim will call upon participation on all levels from policymakers and health officials over affected communities and individuals to the public in general. The Campaign has made remarkable progress and presently in conjunction with its approximate total of 89 partners, is working in 50 countries across Africa, Asia and the Arab region. Ending fistula worldwide will demand political interventions, additional resources, and strengthened collaboration between governments, their partners and society. In each country, the campaign focuses on the three key areas prevention, treatment and rehabilitation. The goals of a mission this magnitude can only be achieved by effective, flexible and wholehearted collaboration in between a multitude of partners. This is probably also the explanation for the length of the Campaign-to-End-Fistula-list. A few selected partners are described in some detail in the next sections, in particlular Hamlin Fistula International because it is the original body involved in the treatment of OF. The Fistula Foundation and Worldwide Fistula Fund are also noted as they belong to what might be labeled "premier league" fistula NGOs in Africa plus they are both very visible when surfing the net for information. The contemporary rediscovery of OF must be solely attributed to Australian/New Zealander couple Drs Catherine Hamlin and her late husband Reginald who arrived in Ethiopia in 1959 on a short term contract to start a midwifery school but found themselves entangled in the overwhelming problem of OF. In 1959 they founded the Addis Ababa Fistula Hospital which has been a huge inspiration for new OF facilities in other places in Africa and South Asia. This was the world's first, and for many years, only medical center dedicated exclusively to providing free OF surgery.12 The facility13 to this date has operated on more than 34,000 women suffering from childbirth injuries. They also co-founded an associated non-profit organisation, Hamlin Fistula, to raise funding for continued OF work. In her autobiography The Hospital by The River: a story of hope4 that was published in 2001 and went on to become an international best seller, Catherine Hamlin tells the story of their life and mission. Her book attracted huge attention and drew international aid organisations' focus on the developing countries' very limited capacity to help the many sufferers of OF. In the book, Catherine Hamlin frames the scenario and the Hamlins' commitment by quoting the parting line of the doctor they were replacing: "The fistula patients will break your heart" p 10. As it turns out the Hamlins' endeavour has had influence not only on the world of obstetrics and public health but has also put its mark on public opinion, inspiring an award-winning film1 and best-selling literature. Catherine Hamlin has been described as a modern day Mother Teresa by New York Times columnist Nicholas Kristof two times Pulitzer Prize winner and co-creator of the Half the Sky movement. She appeared in January 2004 on the Oprah Winfrey television show and this was followed up in December 2005 by another episode for her show where Oprah Winfrey travelled to the Addis Ababa Fistula Hospital and filmed the interview on location. She has received many medical and honorary distinctions and in 2009 she was awarded the highly esteemed Right Livelihood Award, also called the alternate Nobel Prize.14 She can even put the Australian-born Crown Princess Mary of Denmark on the list of celebrities that promote her cause since the Crown Princess became UNFPA patron as of June 2010 where she participated in the Women Deliver Conference and met with fistula survivors at her first official mission. Much more importantly though, the Crown Princess continues to promote the quest against OF suffers such as when she recently appeared in the Danish magazine Billedbladet with multiple articles on her visit in Mozambique November 2011.15 Here among other duties as UNFPA patron, she visited a fistula hospital in Beira and participated in the clinical rounds. During her visit she delivered this very straightforward address to the public: "It is my hope that the stories of these fistula survivors will help inform and create greater understanding of what a fistula is, and that families, communities and leaders will do their part to prevent new cases in the country". Through her great visibility in the press, not neglecting the tabloid part of it, the Crown Prince Mary's advocacy of the OF cause in the broad media is of tremendous value to increasing the knowledge of this terrible disease. Another very similar but probably much more widely known example is the film cited in the title of this article A Walk to Beautiful by Steven Engel http://www.youtube.com/watch_v=3w-fOmovijc.1 This feature-length Emmy award-winning movie draws attention to the dreadful situation endured by innumerable women suffering with OF in Africa and in the case of A Walk to Beautiful, especially in Ethiopia. The film tells the stories of five Ethiopian women with OF who fight, rather than find, their way to the Addis Ababa Fistula Hospital and the free treatment offered to them at this facility. For some of the women this journey took years of unnecessary suffering, because they could easily have been cured from the very start, or better yet, have avoided the ailment altogether had the proper maternal health care and community knowledge been available. The film also can be regarded as a tribute to Drs Catherine Hamlin and her late husband Reginald Hamlin in as much as the Addis Ababa Fistula Hospital was founded by them and still, at age 89, has Dr Catherine Hamlin operating as a fistula surgeon on a weekly basis. Along the same line of thinking is the value of publicity that derives from best-selling fictional literature. In the New York Times bestseller Cutting for Stone16 debut author Abraham Verghese narrates a beautiful and yet dramatic story about a pair of twins, Marion and Shiva Stone, born in Ethiopia before the revolution as a result of the forbidden and secret love between a beautiful Indian nun and a harsh British surgeon. Orphaned at birth by their mother's death due to obstructed labour, and their father's disappearance in shame, they are brought up by doctors at the missionary hospital called 'The Mission', where they were born. Bound together by a shared fascination with medicine, the lives of the twins as well as the place and time of the story reflect the entire scenario of OF as experienced in real life by the Hamlins. Their mother dies from obstructed labour and both her sons relate to the one disease she most likely would had suffered had she survived i.e. OF. One twin bears the name Marion, coincidentally the name of the surgeon regarded by many as the father of fistula surgery, 20th century American physician Marion Sims.7 The other twin, despite not being a medical doctor by education and exam becomes a world famous fistula surgeon, reflecting the fact that dedicated and skilled persons can be trained to master OF treatment, or at least, handle important aspects thereof. This could greatly enhance the future prospects of establishing surgical centers in Ethiopia and the rest of Africa to treat the many thousands of OF patients. The character Shiva has a real life equivalent, in The Hospital by The River we learn of Mamitu, once an OF patient herself, who stays on after her cure and becomes a competent fistula surgeon. She was even awarded the Gold Medal of the Royal College of Surgeons together with the Hamlins, which is a tremendous honour. Finally, as a curiosum, the name of the fictional hospital in the novel is 'Mission' and the Hamlins never hide that they were working out of Christian charity. Hamlin Fistula International was founded by Drs Reginald and Catherine Hamlin in 1974 and oversees the Addis Ababa Fistula Hospital including a long-term care facility at this hospital, plus five mini-hospitals geographically spread out in rural areas of Ethiopia, to help overcome the problem of transportation. In addition, women with severe fistula injuries, who cannot be cured completely, receive an opportunity to lead a meaningful life. Seventeen kilometres outside Addis the rural village Desta Mender ('Village of Joy' in Amharic) has been built to provide a home for chronic patients, providing rehabilitation and training in income-generating activities to allow these women to continue life with dignity despite their disabilities. Some of the girls even receive training to become nurse-aides themselves. All services and treatment at these facilities are provided free of charge. Fundraising issues relating to OF repair surgery is also overseen by the organisation. A midwifery school was established in 2007 to educate skilled birth attendants, and these maternal health workers are expected to greatly help reduce the number of new fistula patients. The hospital also provides training to medical students, local health workers, and international specialists. The Addis Ababa Fistula Hospital has a 120-bed capacity, but allegedly, at times has two patients in some beds. The facility treats more than 2500 women on an annual basis and works closely with them to support their transition back to society. More than 34,000 patients have been treated to date. The organisation also maintains a database to support ongoing research, technique development, and publication. Partner organisations in eight countries including Australia and New Zealand, fundraise and raise awareness about fistula. Most of these organisations have their own website that can be accessed individually and while it seems the main Hamlin Fistula International website at www.hamlinfistula.org has ceased updating information as of 2009 the others have not. The best overview of these sister organisations within the Hamlin Fistula International is found at the UK site www.hamlinfistulauk.org where links to the others are easily found. The easiest access to a newsletter directly from Catherine Hamlin herself containing the latest information about OF work in Ethiopia is at the Australian website www.hamlin.org.au (all three websites accessed 12th January 2013). The Campaign to End Fistula has a total of 90 partners covering a range of organisations such as NGOs, non-profit organisations, international service organisations, corporations, teaching institutions, medical associations and religious communities plus a number of individual independent state governments aside from the UN itself. The entire list can be found at their website. Below is a short run down of two of the main hands-on organisations dedicated to helping fistula patients. The Fistula Foundation – www.fistulafoundation.org – is dedicated to eradicating OF by raising awareness of the condition and raising funds for fistula repair, prevention, and educational programs worldwide. They claim, "We believe that no woman should have to suffer a life of shame and isolation for trying to bring a child into the world". The foundation started out in 2000 as a fundraising organisation to support solely the work done at the Addis Ababa Fistula Hospital, which American founders Richard Haas and daughter Shaleece had visited and found compellingly competent and compassionate in their help to OF patients. From there the movement seems to have grown by itself and in 2009 the Fistula Foundation broadened its mission to fight fistula worldwide. However, it has remained the largest supporter of the Hamlin Fistula Hospital in Ethiopia for the last five years, allowing it to provide free OF repair to any woman in need coming to the hospital. Today, the foundation supports OF programs in a total of 18 countries spread out over Sub-Saharan Africa and South Asia making this NGO the largest private charitable foundation supporting fistula treatment globally. In 2012, The Fistula Foundation was able to include four new countries in their program; Nepal, Somaliland, Zambia and Pakistan. Also in 2012, a new tool in the fight against OF was launched. In a three-way endeavour with Direct Relief International, UNFPA and The Fistula Foundation, the world's first Global Fistula Map was created. This web-based interactive map can be accessed online at http://www.globalfistulamap.org and displays fistula treatment centers across Africa. It is an initial effort toward a comprehensive fistula care map and it is met with great expectations as it can possibly guide NGOs to better channel funds to sites and organisations that have the greatest capacity to provide fistula treatment. The Fistula Foundation also helped sponsor Engel Entertainment's A Walk to Beautiful the stunning film about OF and the care provided at Addis Ababa Fistula Hospital. The Worldwide Fistula Fund (WFF) is a NGO founded in 1995 by Dr L Lewis Wall initially under the name of The Worldwide Fund for Mothers Injured in Childbirth. It was re-launched as the easier-to-remember Worldwide Fistula Fund in 2003. The WFF has focused on helping OF treatment, prevention and rehabilitation in western Africa, particularly Niger. The WWF opened The Danja Fistula Center last February in this extremely poor French speaking country and expects to provide OF repair and additional help to 2500 women within the next five years. In addition, the facility will function as a training and research centre for medical professionals. The intention is to repl
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