Fighting Fistula

©Alixandra Fazzina/ Noor

Obstetric fistula is the most devastating of all childbirth injuries, although many may never have even heard of it. Constantly in pain, leaking urine or faeces, bearing a heavy burden of sadness in discovering their child stillborn, outcasts because of their offensive smell; ashamed, these young women live on the periphery of their former existence, without friends and without hope.

Although once common in western countries, the obstetric fistula is virtually unknown in the developed world today. During prolonged, obstructed labour, sometimes lasting several days, the pressure from the trapped foetus cuts off the blood supply to tissue between the mother's vagina and her bladder or rectum, causing that tissue to die away and creating a hole, or fistula.

Eradicated in western countries at the end of the 19th century when caesarean section became widely available, obstetric fistula continues to plague an estimated two million women worldwide, according to the United Nations Population Fund.

Reconstructive surgery can often heal these women, returning to them their dignity and their lives. However, with an estimated 100,000 new fistula cases each year and the international capacity to treat fistula remaining at only 6,500 per year, the suffering and isolation is life-long for an incalculable number of desperate women, who can’t access treatment.

The specialist surgery skills to treat fistulas must be learned in those countries where women and girls suffer from this debilitating and humiliating condition, primarily in Africa and Southeast Asia. A handful of international humanitarian groups and charities are working to eliminate obstetric fistula, among them Médecins Sans Frontières (Doctors Without Boarders), which has provided fistula repair in numerous countries including Liberia, Somalia, Sierra Leone, Central African Republic, Burundi, Nigeria, Ivory Coast, Chad and, more recently, the Democratic Republic of the Congo (DRC).

This year, due to the numbers of patients identified as needing this specialised reconstructive surgery in MSF’s ongoing programmes, it was agreed to run three camps in the DRC, the first of which was in May, another was held in August and an third is planned for September.

Helen O'Neill, a Dublin-born nurse, is MSF's Operational Advisor for the DRC, India and Sri Lanka, and is based in Holland. She explains to Scope that a month-long MSF camp last year in the village of Dubie in Katanga, DRC, during which 78 young women were surgically treated, identified many, many more fistula sufferers.

“We’ve generated some awareness about the fact that there’s a possibility to treat this condition, and hundreds of ladies have been identified. We don’t have the capacity to do that many, so we will do one camp now [May] and put on an extra in August but in another location. It means some people won’t get treated, but this problem is not going to go away. It’s a life long affliction unless it’s repaired, so maybe next year we will be able to offer them help,” Helen adds, all to aware that she and her team of surgical and nursing volunteers may never be able to keep pace with the numbers who need treatment.

“In 1997, I was in Sierra Leone and we identified a number of women with this problem and I was really lobbying hard, it was so difficult to get anything done. The nearest place that any of them could get repaired, at that time, was in Nigeria. And I think that there were only two surgeons in the world with the expertise to do this specialised surgery at that time, and they were in Nigeria and Ethiopia.

“So we started doing it ourselves in Sierra Leone. We did the first 100 ladies or so and that’s a small volume but it’s still a very small select group of people who have the expertise. It’s quite specialised, but once you learn it, you can repeat it.”

Since then, several MSF surgeons have mastered the techniques and train others through MSF. Dr Volker Herzog, an experienced MSF obstetric fistula specialist, has participated in numerous fistula camps over the years throughout Africa, including this latest programme in the Congo.

“MSF organised the first vesico-vaginal fistula (VVF) camp in Katanga, DRC, three years ago, in the town of Dubie. We operated on about 70 patients and, when we finished the session, the patients who were operated successfully wrote a letter and asked that we return to treat the women who had not yet been operated on. Since then MSF has organised a special VVF camp every year for the past two years. This year it is in Shamwana,” Volker tells Scope.

Helen remarks that this rural village is hard to find on a map. It lies northwest of Dubie. “It’s a very basic bush place, when we started working there we built a hospital and that’s where this fistula camp is, on the hospital grounds. We use the hospital lab facilities and the staff are the same but with two extra – the surgeon and one nurse.”

A Congolese surgeon was scrubbed in alongside Volker to assist and train in fistula repairs during the camp last May. The second camp in August helped to hone the local doctor’s skill in this specialised surgery so that, should MSF ever have to pull out of that region in the future, for whatever reason, there is someone there who knows how to do these repairs.

“We started by raising awareness of the condition among the population in the district via local radio and over 230 potential patients were identified. Of course it is not possible to operate on so many patients in one session so it was planned to start with 80 patients, and that is what we did,” Volker recounts, adding that it is an immense logistical task to install 80 beds, toilets, water supply and food for so many patients and their care takers, and this in addition to running a hospital with about 70 beds.

“MSF operates on about 15 patients a week and at the end we hope that we will have operated on about 70 patients. Not all of the 80 patients we examined had a fistula. Some of them have urethra incontinence so that they are treated with physiotherapy, and some have a urinary tract infection, which can produce symptoms similar to those of a fistula, but can be treated by antibiotics.

“In about 8 percent of operations, the first attempt is not completely successful and the patient requires a second operation. Sometimes the damage in the vagina is too extensive and the patient is inoperable. But usually the outcome is very successful with a cure rate of 90 percent,” the German surgeon notes.

The surgeons, indigenous and foreign, who train to perform reconstructive obstetric fistula repair, are not drawn to this specialised area because of monetary reward - $300 covers the cost of surgery, post-operative care and rehabilitation support - indeed, many offer their services for free. It is the complete transformation of personality in those women successfully treated that spurs these doctors on; the joy that they see in the eyes of patients on the day of discharge, these women are re-animated in the knowledge that their lives can begin again.

“I was confronted with the condition for the first time during the war in Mauritania/Liberia in 2003, where I operated on a woman with a perforated appendicitis and noticed the dreadful smell of urine.

“I was so concerned about the fate of this woman that I decided to learn to repair fistulas. So, I joined the most experienced fistula surgeon, Dr Kees Waaldijk, who has operated on 25,000 VVF patients. I trained with him on three occasions at his hospital in North Nigeria,” recalls Volker.

“The constant leaking of urine out of their bladder wets their clothes and due to the accompanying smell, many communities consider these women outcasts and often they are abandoned by their families and husbands. With a successful operation these women are not only healed of their condition they have had their dignity returned to them - they are no longer outcasts from society and can look forward to their new lives.

“The estimated number of VVF patients in Africa is about 2 million so it is obvious that we need more VVF camps like ours and more surgeons who can operate the obstetric fistulas. More importantly there needs to be more maternal services for pregnant women to prevent obstetric fistulas from occurring in the first place and to avoid unnecessary maternal deaths,” he stresses.

The UNPFA agrees that the key to ending fistula is to prevent it from happening in the first place. Skilled attendance at birth, including swift surgical intervention if obstructed labour occurs, can prevent a fistula.

©Alixandra Fazzina/ Noor

At present, many women in sub-Saharan Africa have little or no access to such services. Births are traditionally at home with untrained people, and even when health care is available nearby, social mores can take precedence over the health of the mother.

A large number of those who die from obstructed labour or who survive with fistulas are between the ages of 10 and 18 and are of small stature. They might have been made to marry and become pregnant quite young, and because their bodies have not fully developed, they cannot deliver the baby. These are the women and girls who are at risk of such complications, and huge numbers of them die.

Helen describes the overall health services not only in this DRC region where MSF operates, but also many other rural areas of Africa, as abysmal. “In theory, or maybe on paper, it doesn’t look too bad but in practice it isn’t good. There are a lot of people that don’t have any healthcare at all. They are extremely poor, yet they are expected to pay for healthcare. They can’t manage that so they will not bother to seek it out. There’s no point in taking a sick child to the hospital if it’s going to die because you can’t afford to pay for the hospital. It’s very sad,” she says.

“For women with an obstetric fistula - some of them may have been suffering with it for decades - this surgery changes their lives completely. Suddenly, they are allowed back into society; they do not smell anymore. They are young women and most of them would be able to have children again.

“I met three women together recently, and the difference before and after surgery is extraordinary. They were all aged between 18 and 30; they were cowed, quiet, miserable, afraid, ashamed – all of these things – when you met them at the beginning. And when you meet them post-surgery, they are laughing, smiling, “bonjour Monsieur le Docteur”, happy women. It’s quite extraordinary.”

The eradication of obstetric fistulas in Africa is decades away at least. But these doctors and nurses with MSF, and other humanitarian groups, are taking crucial first steps toward that goal.

The Campaign to End Fistula

©Alixandra Fazzina/ Noor

During most of the 20th century obstetric fistula was largely missing from the international global health agenda. This is reflected by the fact that obstetric fistula was not included as a topic at the landmark United Nations 1994 International Conference on Population and Development (ICPD).

However, since 2003 obstetric fistula has been gaining awareness amongst the general and medical public and has received critical attention from the United Nations Population Fund (UNFPA), which is spearheading the first-ever global campaign to "End Fistula". Its overall goal is to make the condition as rare in the developing world as it is elsewhere.

The Campaign, launched in 2003, has already brought fistula to the attention of a wide audience, including the general public, policy-makers, health officials and women with fistula. More than $25 million in funding has been mobilised from a variety of donors and activities are underway or being planned in more than 40 countries.

In each country, the Campaign proceeds in three phases:

• First, needs assessments are undertaken to determine the extent of the problem and the resources to treat fistula.
• Second, each country that completes a needs assessment receives financial support for planning, including raising awareness of the issue, developing appropriate national strategies and building capacity.
• Finally, a multi-year implementation phase begins, which includes interventions to prevent and treat fistula, such as improving obstetric care; training health providers; creating or expanding and equipping fistula treatment centres; and helping women reintegrate into their communities.

What can be done to help?

Skilled surgeons can repair obstetric fistula. A simple repair may take only 45 minutes to complete, but many cases are more complex and require several operations. After the operation, the woman will need a bladder catheter for a couple of weeks and will be taught pelvic floor exercises to strengthen their muscles.

Women who have had a fistula repaired are able to have a healthy child, if they receive appropriate antenatal care.

Training local midwives to help mothers give birth safely is vital. They can spot when a mother is in difficulty with the labour and arrange help before it is too late.