Although an increasing number of women undergo surgical fistula repair, little is known about how they see their life prospects after repair and how they perceive being reintegrated into their community. VICTR OKEKE writes on this.
For Ekaete Bassay, remaining at the VVF Ward of the Ogoja General Hospital, Cross River State after her treatment is her next home comparable to paradise.
And frankly, she has nowhere else to return to. She had less formal education and her condition has introduced a form of mental retardation that leaves her guessing where she’s from and parent names.
“We stay at Akamkpa but my parents are originally from Nsit Atai in Akwa Ibom. I stay with my sister in Akankpa but later on she abandoned me, I couldn’t see her again. I couldn’t see anybody who would treat me nor to take care of me.
”I kept begging people on the streets to help me because I was very sick and I needed money to feed on. I didn’t know what happened but I noticed that water was coming out from my vagina every time.
Before I came here, the thing has been paining me. In the nights, I cannot sleep. Urine keeps dropping at very minute. See my clothes, see my bed, everywhere is water-water,” she narrated.
Ekaete aged 26 is a victim of obstaetric fistula following a pregnancy which left her with her without a baby nor husband again. She was brought and dump at the clinic by one unidentified pastor two-months ago.
She relates that she is from a family of six in which four siblings are already dead, leaving her and another sister who abandoned her behind. Meanwhile, her parents are all dead. Her father died while she was still tender.
She says after her fistula is repaired, she would like to receive financial aid to start a business in Akpankpa.
Doctors say her fistula repair has been delayed because she was brought in with a very low CD4 Count (Cluster of differentiation 4) – a test that measures how many CD4 cells that a person has in his blood. This means that much damage has been done to her immune system and fatality could result if her CD 4 count level is not increased before the operation.
For Ekaete and other numerous unreported victims of fistula, healing, recovering, and reintegrating into the family and community after suffering the consequences of obstaetric fistula involves a number of challenges, even after successful treatment.
One of the most pressing needs of these woman after their successful surgeries and treatments is that of reintegration into the society. Most of these women who are found in the clinic wards were picked up by certain neighbourly Samaritans and brought to the centre or they were brought by family members who have exhausted themselves caring for the patients.
This creates the scenario where these woman are helplessly left to make a new start for themselves after they have been treated. They face the challenge of social reintegration, financial sustenance and psychological balance.
Fistula is one of the most devastating injuries of child birth. It occurs mainly as a result of prolonged obstructed labour, without timely medical intervention – such as a caesarean section. The sustained pressure of the baby’s head on the mother’s pelvic bone causes damage of soft tissues creating a hole – or fistula – between the vagina and the bladder and/or rectum. The result is continuous leaking of urine and feaces. When this occurs, a woman has no control of this unnatural phenomenon and if not assisted may suffer isolation, social stigma, neglect and humiliation.
According to United Nations Population Fund (UNFPA), in Sub-Saharan Africa alone between 3,000 and 130,000 of women giving birth develop fistula each year.
However, in up to 90 per cent of cases, the fistula can be surgically repaired. Through the Fistula Care Plus project, the largest U.S. government-funded effort to-date dedicated to treating and preventing fistula, EngenderHealth works to restore dignity to women with fistula and to prevent other women from developing the condition.
The Fistula Care project covers the costs of treatment, equipment, and supplies. It also supports training for providers in fistula repair, nursing, counseling, and quality improvement.
Engender Health Nigeria Country Project Manager; Chief Iyeme Efem says Nigeria currently has over 200,000 women living with fistula with 12,000 new cases occurring every year.
The prevalence of fistula is much lower in places that discourage early marriage, encourage and provide general education for women, and grant women access to family planning and skilled medical teams to assist during childbirth.
Hence the burden of fistula rests largely on the women poor rural communities of the Nigeria and its severe nature puts a serious toll on the lives of those affected. Majority of the victims are very young and without the basic elementary education. Most of them find it difficult to engage in any economic activity, surviving the hardship is very complicated and pathetic as coping is done in isolation and loneliness.
Fistula leaves women with very limited opportunities to earn a living, and many have to rely on others to survive. In some cases, women are abandoned by the partners. Without treatment, the prospects for work and family life are severely diminished. Although some women with fistula display amazing courage and resilience, many others succumb to illness, despair and suicide.
Happily though, fistula is preventable and treatable in the overwhelming majority of the cases.
According to Engender Health Nigeria Country Project Manager; Iyeme Efem, prevent fistula it is necessary to ensure that all women of reproductive age have access to voluntary family planning services, so that every pregnancy is wanted and planned, and every birth is safe.
Also, the World Health Organisation recommends that it is critical to ensure that pregnant women have adequate access to focused antenatal care, skilled birth attendance and emergency obstaetric care.
”It is necessary to address underlying social and economic inequities through initiatives aimed at empowering girls and women in our communities, to enable them to delay marriage and child birth until the appropriate age,” the WHO said.
For the cases that still occur, luckily, almost 90 per cent of fistulas can be repaired successfully. But beyond treatment, a woman who has experienced ostracism, isolation and discrimination at the hands of fistula often needs help to fully regain her life. This requires the support of the family and the community. Social reintegration programmes, including counseling are very helpful, including for the minority inoperable cases, who also have to be rehabilitated as much as possible.
Several studies conducted in East and Central Africa points to the fact that family support is essential to assist women in reintegrating to the life they had prior to the development of fistula. This is particularly true in Nigeria where family is a fundamental and highly valued institution and where the extended family functions as a support group responsible for and obligated to assist each other.
It is, therefore, important to understand how family caregivers are affected by a woman’s return after fistula treatment because their physical and emotional health can influence a woman’s health, welfare, and successful reintegration.
Lilian Teddy Mselle, of the School of Nursing, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania in an article- “Hoping for a Normal Life Again”: Reintegration After Fistula Repair in Rural Tanzania- and published in the Women’s Health Journal said “understanding a husband’s perception and the level of support he can provide is particularly important because men play a key role in decision-making about health and health care.”
Also, Dr Kimberly Jarvis and her colleagues, in a 2017 study published- Reintegration of Women Post Obstetric Fistula Repair: Experience of Family Caregivers; published in the journal of Global Qualitative Nursing Research reports that the reintegration period is a subjective experience, and its duration is determined by the person who is reintegrating and the family’s ability to adapt.
All participants in the study reported challenges related to caring for a family member with an OF, and the physical, emotional, and economic consequences for the family.
Evidently, family caregivers need to know and understand the care their family member requires and how best to give support while maintaining a reasonable quality of life for themselves. Husbands or household heads need to be included in post-fistula teaching because they are viewed as the family’s decision maker and carry significant authority.
Health institutions and professional health associations have a role to play in ensuring that health care providers are competent in their role as family health educators and fistula care advocates.
Dr Jarvis suggests that professional continuing educational courses and mentorship programs regulated through professional associations might be one method of achieving these competencies. Families also need to be given a safe and reassuring environment to ask questions and to help them express their concerns and feelings (i.e., fear, uncertainty, guilt, frustration) throughout the reintegration period.
“Community health nurses need to be formally made aware of and responsible for families in their district who are caring for women post fistula. Greater community awareness and understanding about the causes of and treatments for fistula are needed to assist families to be better supported within their communities,” she said.
According to Solina Richter, a Professor of Nursing and Academic Director of the Global Nursing Office at the University of Alberta, men in the community, particularly those in leadership positions, need to be strong advocates for families during the reintegration period post fistula. Family members also need to be encouraged to share their experiences so to support other families and to validate the need for formal family supports.
Again, conomic difficulties continue to be an issue. There is need for the Office of the First Lady of the states and the federation, the ministry of gender affairs, the ministry of special duties and something like the Imo State’s Ministry of Happiness and Purpose Fulfillment to address the social and financial need of these women.
And additional skills training options should be explored in partnership with families to ensure that these women receive appropriate vocational training in supporting their family needs.
Indeed, family input is particularly important during the reintegration period because many family members are the primary caregivers and the decisions made about OF impacts their well-being and that of the women they care for.
Women who have had surgical repair of an obstetric fistula expect to improve their physical, mental, social, and economic well-being, but for women who have lived with fistula for many years the transition to a normal life can be challenging in terms of re-establishing an identity as a woman, having a live-born child, securing an income, and restoring dignity.
In order to facilitate this transition, surgical repair needs to be accompanied by psychological and social rehabilitation. A holistic approach involving different participants at different levels is required and should take into consideration women’s sexual and reproductive needs as well as strategies for their economic empowerment.