Fistula: Fixing the fate worse than death. That was a headline choice to a previous health feature on the dreaded obstetric fistula condition. Some editorial team members felt it was too strong, for, by all accounts, there is no fate worse than death. 

However, you could be jolted into a harsh world when in a face-to-face encounter with victims of fistula, a medical condition that causes incontinence—involuntary urination or defecation. 

Seeing the hunger for hope in their eyes is like seeing a drowning man grasp at a straw. 

Hearing their tales of dejection and anguish–how a life that should have heralded a moment of joy at childbirth turned into absurdity; smelling the acrid air of urine and faeces that their presence brings; and, the offset salivary glands that calls for instant spitting reaction, all but compel a reflection of how life can be absurd. 

Such was the reality at Kibagaga Hospital on February 6. A team of medical volunteers flown in by the International Organisation for Women and Development (IOWD) was carrying out a fistula camp. 

Outside clinical director Alphonse Umugire’s office, Dr Saifuddin Mama was passing-by from assessing the patients when he learnt of our visit and animatedly begun explaining the medical gymnastics of obstetric fistula. 

Twenty metres away stood a tent in which some of the patients were being accommodated. The pungent smell was already renting the air, but when a woman in her early fifties, holding an ostomy bag, limped to where we stood, the reality struck square.

It was the acrid smell that wafted the message that "it takes a strong heart to keep up with fistula sufferers,” so imagine the stigma a community with a few callous people can mete out on such victims. 

What it really is

A fistula is condition that happens during child delivery when in a hole is punctured between two organs or an organ and the outside. Such a hole can be on the bladder or the rectal wall, causing urine or stool to flow from the high pressure side (urinary tract or bowel) to the low pressure side (vagina). 

Dr Mama (obstetrics and gynecology, University of Pennsylvania, US), says the most common types are between the bladder and vagina (vesico-vaginal), urethra and vagina (urethra-vaginal), and rectum and vagina (recto-vaginal). But the condition could also occur between the urethra (tube that carries urine from the kidneys to the bladder) and vagina (uretero-vaginal) or the colon and uterus (colo-uterine). 

Urinary fistulas leak urine constantly while rectal fistulas leak intermittently with the presence of gas or stool. 

Obstetric fistula is most prevalent in developing countries where healthcare such as antennal care and childbirth is still a luxury for many a woman. Besides, such areas are dogged by traditionalism; the fistulas are almost always due to injury from childbirth, or ritual cuttings or unattended prolonged labour. 

Dr Mama says left without specialised medical attention, a victim not only suffers from incontinence, but is also exposed to cancers such as the colon rectal cancer. 

Such was the fate of Clementine, 20, who suffered fistula during childbirth in her teens but was only able to get medical attention a little too late. 

"The girl had colon rectal cancer and it was bad. I was in touch with Dr Umugire, who volunteered to coordinate Clementine’s treatment between referral hospitals. She eventually had a colostomy at Butaro Hospital (where there is a fully-equipped national cancer clinic) to ease the leaking situation,” said Barbara Margolies, the executive director of IOWD.

The US-based nonprofit organisation has carried out free fistula surgeries on more than 400 women—1,000-plus victims of whom have received various forms of expert care—since April 2010. 

A fistula surgery in the country costs at least Rwf250,000, exclusive of miscallaneous medical expenses. But for the free treatment, a team of IOWD volunteers comprising surgeons, anaesthetists, nurses and others, visit the country thrice a year.

"Not only do our surgeons repair the fistulas, but more often, they need to perform a second operation to repair stress incontinence in the same patient, once the fistula is closed. Often, the damage is so extensive that the surgeons must reconstruct the entire anterior vaginal wall, bladder neck and urethra, and sometimes they must move ureters to a new position,” Margolies, a retired teacher, says.

The IOWD team operates in two district hospitals—Kibagabaga and Muhima—as well as at Rwanda Military Hospital, Kanombe, and King Faisal Hospital, Rwanda. 

Dr Osee Sebatunzi, the director of Kibagabaga Hospital, says about 80 per cent of fistula patients are from the countryside, and that the majority of the patients, pre-treatment interviews show, did not attend antenatal care or needed Caesarean delivery but could not due to lack of facility.

But Margolies would rather teach how to catch to the fish than to give the fish alone. She says preventing fistula is more important than repairing the damage caused.

In a past interview with The New Times, Margolies said the key in the obstetric fistula quagmire is educating women and health professionals as well as improving healthcare infrastructure in the country.

"We can bring American doctors in to repair the fistula, which is great for the patient, but it’s not good for the country,” Margolies said.

For the fistula camp in February, part of the female ward at Kibagabaga Hospital had been reserved for patients coming out of operation theatres. They ‘recuperate’ from the ward before they are transferred to the tent.

Esperance Mukamusoni, 55, bares the few remaining yellow and brown teeth, most of which are broken or pitted at the enamel, to smile. It is probably the first smile she has mustered in 20 years; the time in which she has been held prisoner by fistula.

She winces as she makes an effort to sit up on bed, but does not give a care that her torso is bare, her breast sagging. All she wants is to talk. The relief written in the wrinkles on her face, coupled with the constant grin, says the mother of six from Rutsiro District cannot be any happier.

"I had given birth to all my children without antenatal care. I used herbs and all was well, but in my sixth delivery, things did not go well,” she says.

The incontinence was shocking. Traditional medicine was tried in vain. With poverty, proper medical care was out of the question. The husband abandoned the home, leaving Mukamusoni with the children.

Her despair would get worse when her relatives rejected her, citing her smelly body. Alone with her children, the only living persons who cared to come close to her, Mukamusoni was left having to eke a living by doing menial jobs in people’s farms.

For Dorothe Mukakanani, the world closed on her six months ago during her fourth labour. Her husband was already abusive enough, but when the dreaded fistula added another reason for the man to beat her, it became worse. She was thrown out of the home along with the children.

Mukakanani, whose six-hour operation this writer attended, says she cannot be grateful enough to Karongi District community workers who enlisted her for fistula repair.

‘Going beyond repair’

However, Margolies says "these women who want to work, want to live normal lives but cannot because of their condition.” 

Outside the hospital director’s office, Margolies and Dr Saifuddin Mama are giving out waterproof panties to nine women. These are patients whose conditions cannot be repaired with the surgery done in the country.

"Their conditions are beyond the surgical procedure we have, so we can only give them the waterproof panties which they will use for the rest of their lives,” says Dr Mama.

"It pains me so much to send them back like this; it’s a tragedy for any mother to live like this,” adds Margolies. "These are woman who have lost everything in life except the last thing: the will to live. There is so much publicity about HIV/Aids, tuberculosis, malaria, etc, but government seems not to have a priority for fistula patients… most people don’t even know what fistula is.”

Dr Mama explained to the women why surgery is not an option for their condition, and reassured them that there is always hope in the near future. 

For now, the panties, which come with diaper-inserts that can absorb excreta. 

They might not be the "dream solution for the women” but 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. 

Like Margolies put it, it helps "restore dignity” for the women. All one has to do is to keep washing the diaper-inserts and they would live dry and stench-free. 

It was suggested that the women form an association to advocate for their rights and fight stigma and they quickly warmed up to the idea. They agreed that it was the best way to help those "forced into caves” because of rejection to come out and beat the trauma.

Government in fistula fight

Margolies’ prayer that government does more to raise awareness about obstetric fistula and help fight stigma seemed to have hit home. Two weeks after the February fistula camp, the Ministry of Health launched a six-month campaign against fistula.

Samuel Gashema, the head of maternal and child health monitoring and evaluation at the ministry, said the campaign aims at eliminating misconceptions about the dreaded condition.

At least 3,000 women have been treated of the condition since 2005 countrywide, he said. Official estimates show that two in 1,000 mothers are fistula victims.

Rwanda has 42 public hospitals, including four national and 10 regional referral facilities that can offer fistula treatment.

Ambroise Ruboneza, the mayor of Gatsibo, the eastern province district where the campaign was launched at, called for concerted efforts in the face of stigma against the disease sufferers. 

Ruboneza urged healthcare givers and community workers to respond faster to issues such as women in labour and that citizens should subscribe to health insurance scheme, commonly known as Mutuelle de Sante.

"Victims should not be shunned. Opening up is crucial since this is a genuine threat to your lives,” the mayor said.

Dr Anita Asiimwe, the minister of state for public health and primary healthcare, says other efforts to fight fistula include family planning, public awareness of the condition, especially targeting the youth about early pregnancies and promoting antenatal care. 

"Referral and district hospitals have also been equipped with medical personnel that have experience in managing and treating fistula. Some of the medics get trained by visiting volunteer specialists that government arranges for to come treat patients,” Dr Asiimwe says.

She adds, however, that there is need to train more people, especially in health centres, about the proper measures and procedures to control and treat fistula. Her ministry is focusing on this effort, she says.