Gritty fight to eliminate fistula nightmare in Rwanda
Volunteers and state health workers work to restore dignity for women suffering from ‘shameful’ condition.
- Official estimates show that two in 1,000 mothers in Rwanda are fistula victims.
Three encounters, one message. It’s the struggle for lost dignity among victims of obstetric fistula and the scene is Kibagabaga Hospital in Kigali.
About 15 metres from the maternity wards is a tent with patients in makeshift hospital beds. Some other patients are outside.
Even at that distance, the stench of stale urine emanating from the tent is overpowering. It is the dreaded stench common with fistula sufferers.
As if to compel me to witness the full scale of it, a woman in her early fifties, holding an colostomy bag, limped to where we stood. The reality struck square. When the time for the tour of the tent came, I had to think twice about going in.
Then came the tear-jerking moment when Barbara Margolies, the executive director and founder of the International Organisation for Women in Development (IOWD), and Dr Saifuddin Mama, an obstetric gynaecologist and team leader of one of the IOWD volunteer groups, were distributing padded panties to 10 fistula victims whose conditions could not be repaired with the surgery available in Rwanda.
It is a tragedy for any mother to live like this, Ms Margolies says.
The panties come with diaper inserts that can absorb excreta. They might not be the dream solution but they still are ideal substitutes since the panty allows one to go out and even socialise without the fear of urine or faeces dripping down her legs or staining her clothing.
The third encounter was interviewing newly-repaired women who were recuperating in the ward. The exuberance with which they spoke after their successful surgery was a story in itself.
Ms Margolies and Ira Margolies have been at the frontline in the war against obstetric fistula in Rwanda.
Thrice a year for the past five years, IOWD has brought volunteer experts in obstetrics and gynaecology, pediatrics, nursing and anesthetics to do fistula surgeries, among a catalogue of health issues, and train and share expertise with local medics and medical students.
Ms Margolies is so passionate about the gynaecological condition that when the retired American English teacher begins talking about it, it is as if she were talking about her own child’s health.
In an interview last year, Ms Margolies said preventing fistula is more important to her than repairing the damage it causes; that her IOWD team had a heavy bias towards the former. She said the key in the obstetric fistula quagmire is educating women and health professionals as well as improving the healthcare infrastructure.
“We can bring American doctors in to repair the fistula, which is great for the patient, but it’s not sufficient for the country,” Ms Margolies told Rwanda Today then.
In the past five years, IOWD fistula teams have examined 1,543 patients and performed 581 surgical procedures. The paediatric urology team has done ore than 100 surgeries while the obstetrical gynaecological one has chalked up more than 225 vaginal births, 150 Caesarian section deliveries and about 50 gynaecological surgeries.
The paediatric team has also examined and diagnosed more than 100 patients and taught infant resuscitation techniques at Muhima, Kibagabaga and Rwamagana district hospitals.
Dr Osee Sebatunzi, the director of Kibagabaga Hospital, told RwandaToday last year that about 80 per cent of fistula patients were from the countryside and the majority, pre-treatment interviews show, did not attend antenatal care or needed C-section delivery but could not due to lack of facilities.
Former IOWD team member Dr Darlene Nyenyeri said recent findings show post-C-section fistula cases are increasing every year.
“This is mainly because the medical doctors are badly trained to perform C-section,” Dr Nyenyeri said, adding that fistula in general shows the weakness of Rwanda’s health system.
“The main issue is that those responsible downplay its impact or don’t recognise it. I don’t see fistula being eliminated any time soon; perhaps in 10 to 15 years. The urgent thing authorities have to focus on is education of women to do prenatal visits and deliver at health facility because most of them delay at home or try to deliver at home by themselves.”
However, Dr Teckle G Egiziabher, an obstetric gynaecologist and fistula surgeon at Rwanda Military Hospital, Kanombe, believes the country is on course to eliminating fistula.
“The incidence of fistula in Rwanda is at a minimum, with 415 new cases annually,” said Dr Egiziabher. “So, to curb this, we should have quality obstetric care, health providers should be trained, and continue with the good insurance system so that women access antenatal care.”
Life devoid of dignity
He added: “The majority of the fistula cases are due to prolonged labour — meaning the labour is obstructed, there is lack of emergency services in labour, lack of skilled personnel, lack of emergency skills in the Caesarean section. Attending to all these can help eliminate fistula.”
Athanase Rukundu, a medical student who volunteers with IOWD, said nobody can estimate the anger, misery and desperation that women coming for IOWD help go through.
“It is an absurd life devoid of dignity, earning a living is difficult and their condition forces them into a shell from their families and social gatherings because of the repelling smell from urine leakage,” he said.
These are women who have lost everything in life except the last thing: the will to live.
“Taking care of these ladies is not an easy thing to do; it involves dedicating your heart and efforts to their plight.”
There are no official figures in Rwanda indicating the number of women affected by fistula. However, Samuel Gashema of the maternal and child health monitoring and evaluation division at the Ministry of Health, said at least 3,600 women have been treated of the condition since 2005 countrywide. Official estimates show that two in 1,000 mothers in Rwanda are fistula victims.
Rwanda has met the United Nations Millennium Development Goal (MDG 5) of reducing the number of women who die during pregnancy, or shortly after giving birth, by three-quarters. In 2013, it had 320 maternal deaths per 100,000 live births.
In 1990, the benchmark year for measuring progress, there were 1,400 maternal deaths.
However, the performance is blighted by fistula. Although fistula does not “immediately” kill, its effect on sufferers is more devastating; it’s worse than death.
Last year, the government rolled out the first ever awareness campaign to help eliminate misconceptions about the dreaded condition.
Dr Anicet Nzabonimpa, the in charge of maternal and child health at the Health Ministry, says that at the fistula workshop conducted in Kibagabaga Hospital in collaboration with IOWD, more than 50 per cent of the fistula patients treated were from Eastern Province, where the campaign was carried out.
Nathan Mugume, the head of communications at the Health Ministry, said all suspected or identified fistula cases during the sensitisation activities are directed to fistula repair and treatment referral centres.
Fistula care, Mr Mugume said, is integrated in the complementary package under Mutuelle de Sante.
Rwanda has 42 public hospitals — including four national and 10 regional referral facilities that can offer fistula treatment.