Diversity Series

The Silent Plague
By Parisa Esmaili

Hundreds fidget with their gadgets while others obsessively rummaging through their bags quietly reciting their checklists as they bring clear Ziploc baggies of liquids to their sides. Others read and re-read their gate information as they graze their fingertips along the edges of their tickets.

Some people mutter and let their heads fall back to their neck, their eyes rolling side to side, scanning the never-ending line. The air has become a thick muggy mixture of old women’s perfume, stale cigarettes, coffee, and little boys who smell of wet dog.

Once the four airport security guards, who point their fingers monotonously directing people where to go, come into sight, men begin unbuckling their black leather belts and untying their shoes. Women carefully take off their rings and necklaces and unzip the sides of their chocolate colored boots.

For many travelers, the security gate is the most frustrating part of the airport experience. Yet, nothing could compare to the experience of first time flyer, Fatima Lawal Aliyu, a 34 year-old Nigerian fistula patient. “You know the security has to check you very well so that you cannot enter their country with something that is illegal,” she says.

Aliyu suffers from an Obstetric Fistula, which occurs when a young girl or woman endures a prolonged obstructed labor. Over the three to five days of labor, the infant slowly suffocates and shrinks; this is the only way the woman is able to deliver the baby. Due to the labor, the blood supply to the tissues of the vagina, the bladder, or the rectum is cut off. The tissues die and a hole, known as a fistula, forms. Because of the fistula, urine or feces can pass threw uncontrollably.

“You see, I had two or three big towels that I put behind me, and at that stage if I cannot do that, there is no way for me to escape from the stains or being soiled with urine. When the security guard began to check my body I was praying he would not touch this section, because if he does he will think there is something illegal on this woman,” she said. “He just asks me, ‘great lady, what is it?’ I said ‘it’s a kind of pad.’”

The security guard continued to patronize Aliyu, commenting on how large her “pad” was, and then led her to a search room where a female guard awaited them; Aliyu was given a strip search. “Imagine. I feel very bad because I had been degraded. I’ve got all the embarrassment.”

The guards then asked Aliyu to remove the pad, “So he sees, and I say, it is just a pad. He asked if it was an illness and I said yes. After I share all my secrets, all the [shame] I have for life […] it is something unpredictable even to us patients. Terrible and so devastating.”

In February 2007, Aliyu was the first woman affected to speak in public forum about her own personal history with fistula in hopes of bringing awareness in Brussels before the European Parliament. Following immediately after Aliyu’s speech, a declaration urging to support fistula was written. Before Aliyu, there were no formal documentations of fistula suffering patients who speak and understand both their Native tongue and English.

Women who develop fistulas are often abandoned by their husbands, rejected by their communities, and forced to live an isolated existence. For some, it could mean the rest of their lives. Shame and loneliness are bound to meet.

Fistula has been coined as, “the women’s plague in developing countries.” Since 2003, the United Nations Population Fund, UNFPA, has been dedicated to end fistulas. “There was no coordinated global effort being done with fistulas at the time,” said Saria Stewart, Media Officer of UNFPA. “What UNFPA decided to do was pull all the community-based organizations together to create the ‘Campaign to End Fistula.’” The campaign works to prevent fistulas from occurring, treat those who have been affected, and support women post-surgery. Their goal is to eliminate fistulas by 2015.

Over two million women are living with fistulas in more than 35 countries including, Sub Saharan Africa, Asia, and the Arab region. However, according to UNFPA, those figures were taken in 1989 and are grossly underestimated because it represented the number of patients who had or were being treated. Many are unaccounted for due to the lack of knowledge and under-representation. An estimated 100,000 cases develop each year. The Fistula Foundation, created by Dr. Catherine Hamlin, reports roughly 6,500 women receive treatment each year.

In 1974, Dr. Hamlin and her husband, Dr. Reginald Hamlin, opened the first fistula hospital in Addis Ababa, Ethiopia. It was also the first free fistula repair center. For over 30 years, Dr. Hamlin’s hospital has treated over 25,000 patients, roughly 1,200 per year with an additional 30 long-term patients.

During her July 2004 United Nations Population Award acceptance speech, Dr. Hamlin, often referred to as the “Mother to fistula” said, “childbirth should be a joyful occasion. But for these fistula girls, it has developed into a nightmare and a horror, to suffer the agony of days of labor, with nobody but the village women to help and nothing to relive the pain, to deliver their longed for child as a stillbirth, and then to experience the awful consequences of this ordeal.”

The whole picture is an unimaginable plight, and one which no woman should be called on to endure, but one that is being repeated all over the Developing World, where women have no access to medical help. All these injuries are preventable. Fistulas are treatable. But, as with many developing countries, women with fistulas are either unaware that treatment is available or they simply do not have the financial resources to afford it.

Those who are fortunate to learn of available treatment, often hear through radio or by other women who have come back to their home villages after being treated. The cost of treatment, including surgery, post-operative care and rehabilitation support is $300. The fistula surgery itself costs $80.

For many women seeking treatment it is the first time they have stepped foot outside their village. Sadly, these women are poor, illiterate, and living in remote rural areas. When they come to the hospitals, they have been traveling for days; perhaps weeks and either have little or no money.

The most important goal to accomplish, concerning obstetric fistula is education, says Stewart of UNFPA. It is the key in knowing fistula is not a woman’s fault and it is the key in preventing more fistulas from occurring. “So many are poorly informed about the risks of childbirth and the need for medical care,” Stewart says. UNFPA, and countless other organizations, feel it is imperative to emphasize pressure in educating men.

“Men hold the key to education. Community, religious, political leaders… it’s all men who have the say in women’s health. We live in a man’s world, especially in areas where things like this occur,” Stewart said. Informing men about reproductive health issues through the community can encourage and empower them to be aware of the issues.

Empowering women is also very essential in acknowledging and preventing fistulas from occurring. There are certain stigmas whispered, slandered, and passed through villages and communities about fistula patients. Often they are blamed for their uncleanness condition and the years of isolation a woman experiences as, “For their own good,” but it is long, painful and enduring torment.

Once women go back to their villages many of them do not want to talk about their experience. After years of attention drawn to their isolation due to their condition, they do not want to draw any more attention for having been treated. “In their mind, it only further reminds the community and humiliates the woman. That’s the problem,” Stewart said, troubled by her own statement. Enduring shame, mentally and physically, for so long, the last thing they [fistula patients] want to do is become a walking advertisement of what happened.

From February 21 to March 6, 2005, UNFPA launched the “Fistula Fortnight,” a two-week training and treatment project that addressed the problem of fistula in Nigeria, one of the larger areas affected.

Twelve Nigerian doctors and forty Nigerian nurses, as well as four volunteer doctors from the US and UK, participated in the Campaign. An additional 60 Nigerian nurses and Red Cross volunteers trained in counseling and post-operative care for patients.

After two weeks of learning and maybe a little bit of self-growth, doctors preformed 572 operations on 564 women. According to the campaign, the closure success rate was 87.3% determined at six to eight week’s post-operative. The other 20 to 30 percent were expected to progress over the following months, but determined as normal.

When Aliyu spoke in Brussels, the media and Parliaments asked the same repetitious question, ‘What can we do?’ Her answer was fitting, “The solution for people in the world is to raise a helping hand or to raise capital towards good medical facilities, attendants and medical personnel. I have to repeat the point again. Better birth attendants, and better health care facilities and also a kind of community-based intervention program have.”

During the Clinton administration, a signed proposal guaranteed setting aside $34 million in funding towards UNFPA. Instead, since 2002, the Bush administration de-funded UNFPA on claims they [UNFPA] support Chinese government in force sterilization and coercive abortions.

In June 2005, New York Representative, Caroline Maloney, reintroduced legislation, “Repairing Young Women’s Lives Around the World Act,” that would mandate $34 million strictly for fistula support.

Stewart’s eyes scanned the perimeter of the café, taking in the women on their lunch breaks, chattering to their girlfriends and laughing. Her eyes softened but remained adamant, “I think everyone would agree, this is not something political, this is strictly women’s health, and something needs to be done.”