By Kelvin Tembo

Fyness Ngoma’s happiness after delivery of a baby in 1990 was short lived. She could not understand why her urine had become uncontrollable.

“I gave birth to a baby girl at Chulu Health Centre in Kasungu, but before I was discharged, I developed a condition where urine was coming out uncontrolled,” the 65-year-old Ngoma told Rural Reporters. “Despite this condition, after spending few days at the health facility, I was discharged with no solution to my problem, and when I inquired, the doctors insisted that I will be okay in few days.”

Few days turned into weeks and weeks turned into months until months turned into years, but her condition did not improve. The lack of medical assistance at the health center propelled Ngoma to seek alternative medicine.

“With advice from people who knew my condition, I started visiting different traditional doctors with the belief of getting healed, but despite spending a lot of money paying traditional doctors, my condition worsened,” Ngoma said.

“In 1994, I moved from Kasungu to Mbalachanda in Mzimba which is my home and as before I continued visiting traditional doctors but nothing changed such that I just gave up on seeking further help as I accepted that it was what God has in store for me,” she explained.

About two decades after moving to Kasungu, Ngoma met Catherine Tembo, a community-based fistula ambassador, who was looking for fistula patients to undergo fistula repair at Bwaila Fistula Care Centre.

“I decided to go but I had little hope. We left on 26 November 2016 and on December 1, I underwent the procedure, two weeks later I was discharged fully recovered,” Ngoma said.

“For 26 years I had this condition, I did not know it was fistula because in my lifetime I never heard about it,” she said. Adding, “I thought I was the only person in the country with this condition only to realize upon reaching the care center that many other women are suffering from the same condition.”

Melina Botha, a 43-year-old woman from Tondo Village of Mzimba, had a similar experience.

“In 1996, I got pregnant, but I delayed to go to the hospital for delivery such that I started experiencing labor pains while at home,” Botha said while narrating her experience.

Botha thought it was too late to head to the clinic, and turned to a traditional birth attendant. But she could not assist with the delivery procedure.

“After her failure that is when we visited Mzambazi health center,” Botha said.

The health center could not handle her condition.

“I was referred to Mzimba District Hospital…it was night, and the ambulance was to be available in the morning,” Botha said.

“Before I was taken to the district hospital I gave birth to a dead child and soon after giving birth uncontrolled urine started coming out,” she said.

For 21 years, Botha tried different treatment solutions but to no avail. Like Ngoma, in February this year, she came across a fistula ambassador who referred her to Bwaila Fistula Care Centre where after spending less than 20 days she was discharged with a clean bill of health.

Fistula prevalence in Malawi

Many women like Ngoma and Botha have lived with ignorance about how to seek medical help for obstetric fistula, a condition they believed defy treatment.

“The current state of fistula right now is that indeed we have patients with fistula in Malawi even though most of them don’t know,” said Margaret Moyo, country director of Freedom from Fistula Foundation.

Lack of awareness about fistula – its causes, prevention, and treatment – puts more women at risk, Moyo said.

One in every 100 women of reproductive age (15-49 years) in Malawi has fistula [or has suffered from the condition], according to the statistics from a 2015-2016 health demographic survey.

In Malawi also 4-in-10 women in the rural area know about the health condition compared to 6-in-10 women in the urban.

The prevalence is said to be in the same category with other developing countries in Southern and Eastern Africa, even though Malawi’s population is smaller in number, stated Grace Hiwa, the Fistula Program Manager at the United Nations Population Fund (UNFPA).

“The possible challenges that put Malawi in this state is the weak health system and also literacy levels and cultural practices prevailing among the Southern and Eastern African countries,” Hiwa said.

“Fistula is preventable, and also there are so many things that can help,” she said.

Delaying first pregnancies, accessing good antenatal care, and availability of good referral systems during labor, are some of the preventive measures Hiwa listed.

“The people who suffer more are the people who are far away from the hospital who cannot afford to go to a good hospital to get the service,” she said.

Making Fistula treatment more accessible

While women like Ngoma and Botha had to suffer from fistula for over 20 years, fistula is curable, and the treatment is very simple regardless of how long one has been suffering from the condition.

“The treatment differs from patient to patient but the whole treatment process from the time a patient is taken to the hospital to the time of discharge is usually two weeks,” said Ennet Chipungu, a Fistula Surgeon at Bwaila Fistula Care Centre.

“And on the actual procedure, it depends on how complicated one’s condition is. For simple conditions, it takes 30 minutes, but complicated ones can last up to four hours,” she explained.

“The procedure is simple and not in any way scary as it is done while the patient is awake and talking,” she said.

She clarified that the complications associated with treatment or fistula repair are not measured by how long a patient has lived with the condition.

Social impacts of fistula

Unlike other health conditions, fistula is not deadly, but patients who are suffering from the condition are subjected to stigma and often suffer social exclusion in communities where they live.

“Fistula patients are usually traumatized because of the smell,” said Moyo.

“It is either you are smelling stool or urine, so you don’t associate in any way in the society,” she said.

Apart from social exclusion in the community, their family life is also affected, Tobias Soko, a 65-year-old man of Zinyathi Soko Village, whose wife suffered from fistula for 21 years explained.

“The twenty-one years my wife was suffering from fistula were the worst years of my marriage as I could not enjoy the privileges of a married man. Each time I had to make love to my wife I was forced to use condoms, but even with condoms the love making was not enjoyable because of her condition,” Soko said.

Challenges in the fight against fistula

Aside Knowledge gap and limited treatment services as well as qualified doctors to do repairs, treatment misconceptions remain one of the biggest challenges in the fight against fistula in Malawi. Some community members discourage fistula patients from seeking medical assistance even though the treatment is provided for free. Some call the intervention satanic.

“When I volunteered to go for medical help, people discouraged me that they are taking me to the hospital to suck my blood and kill me,” Botha recounted. “I almost reversed my decision to go to the hospital, but with the good care I received I can say these people are not Satanists and I urge patients suffering from fistula to visit Bwaila Care Centre, they take good care of patients.”

Also, continued cases of child marriage and early pregnancies put the country at risk of a continued rise in cases of fistula as girls married at a tender age are not mature to stand delivery.

Current interventions

The Ministry of Health is working with development partners like UNFPA, Freedom from Fistula Foundation and other organizations to tackle the issue.

“The major interventions that we are doing now is sensitization campaigns,” said Bestone Chisamile, Chief Director at the Ministry of Health.

“We also have ambassadors that are going out in the rural areas trying to convince women who have the problem of fistula to be assisted medically,” Chisamile said.

The ministry is also working towards increasing the number of facilities where fistula patients can find help and access medical treatment.

The sensitization programs according to Freedom from Fistula Foundation Country Director include holding meetings in communities with chiefs, other influential leaders, religious groups, and women groups. Fistula patients who have had fistula are also invited for them to understand what fistula is, the causes and preventive measures.

“And at the same time we have identified several women who are very interested in going out in communities to talk about fistula and bring patients with fistula,” Moyo said.

These women who serve as fistula ambassadors have contributed to the success of the sensitization program.

“Lots of patients are coming to the center through a former patient,” Moyo said.

UNFPA is supporting the government to make sure that medical experts are available to do repairs by supporting the training of doctors and clinical officers and nurses.

“Apart from training we also procure equipment and supplies like medicines,” UNFPA’s Hiwa said. “We also make sure that when the women come, usually these women are coming from the rural they don’t have enough things, so we buy soap, food and we allow them to intermingle with their friends otherwise for a poor person it is very difficult to access fistula treatment because it cost not less than MK500 000 (around $680) to cure a fistula patient,” she said.