Too many in Congo's Ebola outbreak are dying at home

Two-month-old Lahya Kathembo became an orphan in a day. Her mother succumbed to Ebola on a Saturday morning. By sunset her father was dead, too.

They had been sick for more than a week before health workers finally persuaded them to seek treatment, neighbors said. They believed their illness was the work of people jealous about their newborn daughter, a community organizer said, and sought the guidance of a traditional spiritual healer.

The Ebola outbreak in eastern Congo is ravaging Beni, a sprawling city of some 600,000, in large part because so many of the sick are choosing to stay at home. In doing so, they unknowingly infect caregivers and those who mourn them.

"People are waiting until the last minute to bring their family members and when they do it's complicated for us," says Mathieu Kanyama, head of health promotion at the Ebola treatment center in Beni run by the Alliance for International Medical Action, or ALIMA. "Here there are doctors, not magicians."

Nearly one year into the outbreak which has killed more than 1,700 and was declared a global health emergency this month, a rise in community deaths is fueling a resurgence of Ebola in Beni. During a two-week period in July alone, 30 people died at home.

Health teams are now going door-to-door with megaphones trying to get the message out.

"Behind every person who has died there is someone developing a fever," Dr. Gaston Tshapenda, who heads the Ebola response in Beni for Congo's health ministry, told his teams.

Many people still don't believe Ebola is real, health experts say, which stymies efforts to control the disease's spread.

Ebola symptoms are also similar to common killers like malaria and typhoid, so those afraid of going to a treatment center often try to self-medicate at home with paracetamol to reduce fever.

But Ebola, unlike those other illnesses, requires the patient to be kept in isolation and away from the comfort of family.

Dr. Maurice Kakule, who became one of this outbreak's first Ebola patients after he treated a sick woman at his clinic, is now trying to make it easier for those who are ill to get help in and around Beni, near the border with Uganda.

He and other survivors, who are now immune to the disease, run a motorcycle taxi ambulance. After receiving a phone call for help they go to homes, reassure the sick and take them for medical care without infecting others.

People's most common fear is that they will only leave an Ebola treatment center in a body bag, Kakule says.

"Some have heard of the problem of Ebola but there have been no survivors in their family," he said. "Since they had relatives die at a treatment center, they think people are killed there and that's why they categorically refuse to go."

They fear, too, that they will die alone, surrounded only by health care personnel covered in protective gear from head to toe.

To try to humanize the care of patients in isolation, ALIMA's Ebola treatment center in Beni places some patients in their own transparent room called a "CUBE," where they can see visitors from their beds. Others share a room with one other patient and a glass window where loved ones can gather.

While there is no licensed treatment for Ebola, patients in eastern Congo are able to take part in clinical trials. That's a welcome change from the 2014-2016 outbreak in West Africa when many patients entered Ebola centers never to come out alive again. More than 11,000 people died.

Still, the measures needed to keep Ebola from spreading remain difficult for many people to accept.

"We cannot be oblivious to the fact that when you're sick with Ebola you're put somewhere away from your family, with a 50% chance of dying alone from your loved ones," said Dr. Joanne Liu, president of Doctors Without Borders, which is helping to fight the outbreak. "I don't blame people for not finding this attractive, despite the fact that we have a clinical trial going on."

The day after the deaths of baby Lahya's parents, a morgue team in protective clothing carried their carefully encased bodies to a truck for a funeral procession to a Muslim cemetery on the edge of town.

In the background was the sound of workers hammering away as they built more space at the nearby treatment center to accommodate the growing caseload.

Lahya developed a fever but has tested negative for Ebola. The infant with round cheeks and gold earrings is in an orphanage for now, while her 3-year-old sister is being cared for by neighbors who hope to raise them both.

But the sisters will have to wait a bit longer to be reunited—their adoptive father and former nanny both have tested positive for Ebola and are being treated.

The fateful decision to avoid treatment centers haunts survivors like Asifiwe Kavira, 24, who fell ill with Ebola along with eight of her relatives.

Health teams came to the house in Butembo, trying to persuade them to seek treatment. Most of the family, though, said they wanted to treat their fevers at home. After three days of negotiations, Kavira finally agreed to seek help, believing she was on the brink of death.

She would be the only one to survive.

Her mother, grandmother, brother and four other relatives all died at home. An older sister joined her at the treatment center, but medical care came too late.

"I tell people now that Ebola exists," Kavira says, "because that is how I lost my entire family."

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