A mother's fight against Fistula and how she won through

23 May 2019
Photo: Asma Akter/ UNFPA Bangladesh

Marium, a 21-year old youth, is a survivor of obstetric fistula – one of the most debilitating childbirth injuries among women, which often leads to chronic medical problems, depression, social isolation and deepening poverty. She travelled to Dhaka, with her toddler in her arms, to observe the International Day to End Obstetric Fistula along with other fistula survivors.

“I had a beautiful childhood,” says Marium who hails from the bucolic Gaibandha. “I had so many good friends. We used to ramble around our village all day long. But it all came to a halt once I got married.” Marium got married at the age of 17, immediately after finishing secondary school. “Within a year of my marriage, I got pregnant with him,” she points to her toddler. “And the events that followed the pregnancy soon turned my life upside down.”

Pregnancy in Marium’s village, like many other corners of Bangladesh, is deemed as a domestic affair and usually treated as such. “We are encouraged to deliver at home and it was no exception for me.” She recounts,“The labour pain sustained for more than 12 hours, but no one batted an eye about it.” There was no skill birth attendant during her delivery, Marium informed, adding that everyone around her at the time reassured her that the excruciating and prolonged labour was only normal.

“It did not take long for the fistula symptoms to appear. The fecal leakage started immediately after the delivery. Yet, I was convinced for a few weeks that it will get better with time.” Two months had passed by when Marium finally went to see a doctor at the local hospital. There she was diagnosed with obstetric fistula – a hole between the vagina and the rectum (or bladder) which leaves women incontinent, and it could also cause neurological disorders, orthopedic injury, bladder infections, painful sores, kidney failure or infertility.

Marium was informed by the doctor that she would have to wait at least 3 months before going through any surgical procedure to repair the fistula. She was in pain and the social, psychological, and economic consequences of obstetric fistula was intolerable.

“The odour from constant leakage was unbearable for me, let alone for others. On top of that my case was completely new to my family as well as people in my local community. It is a curse beyond repair they said,” her voice cracked. Even though the doctors told her that it is curable, the exorbitant cost of surgery led Marium to lose all hope.

Combined with the physical drain, the stigma and ostracism surrounding her fistula confined Marium within the boundaries of her home.

“I isolated myself from the outer world and suffered from depression and extremely low self-esteem.”

Luckily for Marium, her husband did not abandon her. In fact, it was her husband who started looking for remedies in different places and eventually got in touch with a fistula survivor.  

“It was that survivor who told us about the free treatment provided at LAMB Hospital,” she says, referring to the  UNFPA supported project to end Obstetric Fistula. “That was the first ray of hope I saw after a long time and immediately went to the LAMB Hospital in Dinajpur with my husband.”

LAMB Hospital is a centre for Female Genital Fistula repair operations in Rangpur division. With support from UNFPA, they are one of the leading facilities providing necessary services which includes capturing, treating, rehabilitating and reintegrating genital fistula patients and restore their capability for a normal life. Besides LAMB, a number of government medical institutions including National Fistula Center of Dhaka Medical College, and University Fistula Center of Bangabandhu Sheikh Mujib Medical University along with several privately owned hospitals in different districts provide Female Genital Fistula repair operations with UNFPA’s support.

After going through the surgical procedure, Marium has fully recovered now. However, the psycho-social toll that this took on her is yet to be mended. An estimated 19,500 women like Marium are still suffering from this condition in Bangladesh.

“Women with fistula are evidence of health systems which struggle to deliver accessible, timely, quality intrapartum care,” says UNFPA’s Chief of Health in Bangladesh Dr. Sathya Doraiswamy. 

“Healthcare costs can be prohibitive and catastrophic for poor families, especially when complications occur. Sustainable solutions for ending obstetric fistula require well-functioning health systems, well-trained health professionals, access to and supply of essential medicines and equipment and equitable access to high-quality health services, along with community empowerment,” he added.

Evidence suggests that even when the services are available, many women are not aware of them or cannot afford or access them because of multi-faceted socio-economic barriers. Given the current rates of treatment relative to the existing backlog of cases as well as the unfortunate occurrence of new ones, Dr. Sathya surmises that many women and girls with fistula may not receive treatment in their lifetime.

On the occasion of the International Day to End Fistula 2019, UNFPA, in collaboration with the Government of Bangladesh, launched a National Strategy to end Obstetric Fistula. The strategy entails a  renewed commitment from the government to end obstetric fistula and to look at fistula not just as a medical issue but also a social issue.

“Despite the remarkable progress achieved in Bangladesh since the International Conference on Population and Development (ICPD) in 1994, there are still thousands of women and girls who have not benefited from the promise of ICPD–including the most marginalized and stigmatized women and girls who suffer from fistula,” says Dr. Asa Torkelsson, UNFPA Representative in Bangladesh.

“After 25 years, 2019 will be critical for the work we do in serving women and girls around the world. UNFPA wants to celebrate the achievements of the Government of Bangladesh, reinvigorate the movement and complete the unfinished business set out in Cairo with the ICPD,” she added, suggesting that scaling up national capacity to provide access to comprehensive emergency obstetric care, treat fistula patients and address the underlying health, socioeconomic, cultural and human rights determinants, is fundamental to eliminating fistula.

Dr. Torkelsson also stated that ensuring presence of a midwife during childbirth can substantially avert maternal morbidity and identify Obstetric Fistula early.

“Recognizing the importance and long-term benefits of investing in building the skills of midwives is therefore imperative to end obstetric fistula,” she said.

The Second National Fistula Strategy has emphasized on ensuring that service providers have appropriate skills for fistula care through enhanced quality of training, mentoring to retain surgical skills in institutions and designating fistula repair sites only when they meet a set standard for quality services. It has also provided guidelines for expected levels of fistula care through different tiers of health services. A distinct role has been proposed for community clinics for prevention, care and referral of fistula patients.

UNFPA Bangladesh works with national partners to improve the treatment and rehabilitation services for Obstetric Fistula patients, while supporting dedicated fistula operation teams at all medical college hospitals.

While overcoming the psychological toll caused by the disease, Marium decided to resume her studies. She is now back with her friends at the Gaibandha Government College, pursuing an undergraduate degree in humanities. When asked, Marium said her vision is to equip herself with substantive knowledge, which she wants to use as a building-block for a society conducive to proper treatment and rehabilitation of fistula victims.

“I do not want my child or anyone for that matter to experience what I went through. I want to build Bangladesh where there is no social ostracism against fistula victims, and in due course, no woman suffering from fistula,” Marium hoped.