Imaging this; you were born in a pastoralist family living in the rural parts of Ethiopia. The community has its own traditions and way of living. And as part of the customs you will eventually get married and had your first child while being a teenager. Because of lack of obstetric facilities and trained midwives, you are forced to go through difficult labor during childbirth, which will cause obstetric fistula and urinary incontinence. Then you will start an isolated life after being diagnosed with fistula.
This has been a serious problem in Ethiopia, especially in poor urban and rural areas. According to the Addis Ababa Hamlin Fistula Hospital, Ethiopia has a backlog of 39,000 fistula cases and an additional 4,000 new cases suffering every year. . Obstetric fistula refers to an injury, which results from long unrelieved obstructed labor. It is constant pressure of the unborn baby’s head against with the mother’s bony pelvis in unrelieved and prolonged labor over the span of several hours and days, leading to the death of tissue and an abnormal opening between the birth passage and bladder, and/or rectum. Because of this traumatic experience, the woman becomes incontinent of urine and/or feces and it can only be cured by surgery, making her repulsive to those around her due to the constant trickle of body waste. Women suffering from fistula have been marginalized by the society, including their own families.
Aiming to alleviate the problem, the Addis Ababa Hamlin Fistula Hospital,
The organization was founded by Reginal Hamlin (MD) and Catherine Hamlin (MD) in 1974. They were in Ethiopia to train midwives when they discovered the terrible plight of the fistula patients.
“Mourning the stillbirth of their only child, incontinent of urine, ashamed of their offensiveness, often spurned by their husbands, homeless, unemployable, except in the fields, they endure, they exist, without friends and without hope. They bear their sorrows in silent shame. Their miseries, untreated are utter, lonely and lifelong,” Reginal Hamlin once said.
In addition to the main hospital in Addis, there are other regional centers for those patients who cannot come to the capital for treatment. These centers are located in four directions of Ethiopia. Besides, Desta Mender, a farm and training center for long-term patients, all of them are run by Hamlin Fistula Ethiopia, a registered charity in Addis Ababa.
Though obstetric fistula is a common problem in Ethiopia, the general public still lacks knowledge. A considerable number of citizens in Addis barely know about this problem since most of the patients come from rural areas. They have no access to facilities, like roads, hospitals, water and so on and have no idea what fistula is, feeling surprised when they find out about their problem. Sometimes, they even take it as a curse. Hassena, a former patient from Afar Regional State, who was cured at the Mekelle center, did not have any knowledge about fistula and had lived with incontinence for over five years without improvement. She thought it was a curse and something incurable. So she had never visited any clinic and stayed home ashamed and depressed, abstaining herself from socialization.
Lack of public knowledge has forced patients to live in isolation for a long period of time. Their families also try to hide them and do not allow them to meet with others and no exploration is permitted since they do not want to be considered as a cursed family in their own community. If there are some opportunities or accesses, they may bring the patients to a clinic. Adding insult to injury, they do not receive support from their husbands who usually leave them as soon as they realize the problem, and get married with another woman, avoiding taking responsibility. Eventually, the patients go back to their original families and their parents take care of them.
In addition to the marginalization, the patients hate themselves and live in isolation because of their uncleanness. Lack of water is the other problem for them not to be hygienic. They need to travel for hours to get water. In that regard, they are ashamed of themselves. Worse, they do not have meals together with their family. Most of those who had/have been suffering from obstetric fistula cry when they share their story. “Why do I have to live with this problem?” they ask.
In fact, the isolation is caused by the self-criticism and the reaction of the community and family members. Another cured former patient, Asnakech Belay, 22, had her first childbirth with a protracted one day painful labor in a clinic near her place; that resulted in fistula. She had been transferred to another nearby clinic for 15 days, and finally had access to Hamlin Fistula Hospital. Though she had support from her husband and family, she was still feeling ashamed. “My husband is living with my family, I am really lucky that I got the support from them at that time and my husband stood by my side all the time,” she says. Asnakech is currently staying at the hospital and is going to have her second childbirth next month. Unfortunately, most of them do not receive support from their loved ones. Another patient, who was living with this problem, lived an isolated life for 40 years which eventually led her to be blind. If the patients abstain themselves in a dark room without any sunshine for a long period of time, they would then become blind.
According to Aschalew Tadesse, communications officer at Hamlin Fistula Hospital, the psychological injury of patients is as big as the physical problem, and it is much more difficult to get cured. In that regard, they are currently working on raising public awareness in coordination with the Government of Ethiopia. In addition to that, the establishment of Hamlin College for Midwives has been very instrumental. The college provides training on how to avoid obstetric fistula. The midwives will be trained for four years and go back to their respective communities upon graduation. They also work with local clinics and teach the community about fistula.
In addition to that, there are also different media outlets to raise public awareness, including different radio programs. They also coordinate with organizations in Addis, and present the stories of patients to international and fundraising partners. Apart from creating public awareness and knowledge about fistula, there are some facilities, which designed for treating psychosocial problems. The main objective is rebuilding the self-dignity and self-reliance of patients after their long-sustained injury and recovery time. “The main reason for them to feel ashamed is because they used to constantly leak urine. If it stops and becomes dry, they won’t be isolated anymore. Their families will be happy and welcome them back again and they will no longer be stigmatized,” Aschalew says.
The hospital not only provides physical treatments, including surgery and physiotherapy, but also has income-generating trainings for the patients. The hospital trains them so that they can make a living on their own and be self-reliant without further assistance from the hospital. They may even provide cured patients with seed money so that they can start a new business after the trainings. “We don’t want them to wholly depend on us. What we want to do is show them the way. We train them or provide them with seed money to start their own businesses,” Aschalew says.
Around 85 percent of the patients have completely been cured and most of them went back to their respective families. Al though those who have not been fully cured manage to start a new life, they stay at the medical centers since they need extra or life-time treatment. They could run a coffee shop in Addis or might get married to a new husband and get ready for their next pregnancy. They might also go back to the place they came from and integrate back into the community. Most of the former cured patients come back to the hospital during their next pregnancy and prepare for the childbirth since it is the safest way.
It is a life-long and life-changing project and the hospital provides so much for the patients. “Fistula has taken everything from me. I lost my strength, social life and confidence. What I want is to do is integrate back with the community. That’s why I decided to have extra treatment. I would like to thank them for helping my daughter and I free of charge,” Temimat, a patient at the hospital in Addis, who is waiting for another complicated treatment, says.