Joniste Kahambu, whose three-year-old son died of Ebola, works as a ‘lullaby singer’ at the Butembo Ebola creche CREDIT: SIMON TOWNSLEY
For a patient diagnosed with perhaps the world’s most chilling disease, Congo’s Ebola treatment centres are a terrifying place to be.
From the moment their blood tests positive, victims are placed in hermetically sealed bio-secure units. As they teeter between life and death, almost the only physical contact they have with the outside world is with doctors clad head to toe in decontamination suits.
There is one exception, however: In almost every transparent plastic cell, a survivor of Ebola, now immune to the disease, is on hand to offer solace, encouragement and — because there is no need for protective garb — a human touch.
So soothing is their presence that such survivors are known as “lullaby singers”. With Ebola being declared a global health emergency last week, nearly a year after it first broke out, they may just hold the key to defeating the disease.
Mwamini Masiki volunteered to be a lullaby singer in January after winning a gruelling-month long battle with the virus that killed her young nephew.
Last week she began looking after an unnamed baby boy, delivered in one of bio-secure units at the Ebola treatment centre in Beni, a town in eastern Congo’s North Kivu province that has recorded 321 deaths since the outbreak began last summer.
The baby, just two days old, may or may not have Ebola. His mother contracted the virus when she was six months pregnant and although she recovered the virus may have lingered in her amniotic fluid or placenta.
Still too weak from her ordeal, Mrs Masiki is doing the job for her, soothing and feeding another woman’s child with relentless dedication.
“Whether or not he has Ebola, I’m trying to do the best I can to give him a chance,” she said.
It is not just in the treatment centre that survivors are doing their heroic and exhausting work. They also play a vital role next door in the UNICEF-managed nursery where children of Ebola patients are housed.
Caring for the young in such circumstances presents significant challenges. Even though they have been vaccinated, the children here may also have been infected, but until the 21-day incubation period has elapsed, no-one can be certain.
Isolation is therefore essential. Healthcare workers cannot touch the children, who must also have no contact with each other. Neither food nor toys can be shared.
Without the lullaby singers offering food to infants and comforting arms to older siblings who have either just lost a parent or may be about to, the plight of the nursery’s children would be much more wretched than it already is.
Esperance Masinda does not even blanch when Bosco, the five-month old boy in her arms, spits up most of the formula she has just fed him onto her chest.
For her, looking after Bosco, whose mother is in the grip of Ebola in the centre, is a sacred duty. When Mrs Masinda had the disease last year a stranger looked after her baby daughter.
When she was discharged, she promised God she would do the same.
“I wanted to help other people’s children, just as other people had cared for mine,” she said.
Aid workers fighting to contain the Ebola outbreak in the Democratic Republic of the Congo are increasingly convinced that those who survived the disease could play a vital role in ending the worst outbreak in the country’s history.
The third and perhaps most important role that survivors play is to spread the message that Ebola is a real disease not a conspiracy concocted by westerners and the Congolese government.
Such beliefs have been widespread. According to a survey conducted in North Kivu last September by the Lancet Infectious Diseases Journal, a quarter of those questioned did not believe that Ebola exists.
Instead many reckoned some kind of plot was afoot, accusing doctors of killing healthy patients in Ebola treatment centres in order to sell their body parts to devil worshippers.
As a result, few bothered to take the precautions needed to stop the spread of the disease, handling both the sick and the dead with abandon.
Ebola, whose symptoms include fever, diarrhoea and sometimes bleeding from bodily orifices, is spread by coming into physical contact with an infected person.
Treatment centres have been attacked. Seven medical and social workers involved in the fight against Ebola have been killed.
Such conspiracy theories may seem outlandish and self-harming. Yet North Kivu, like neighbouring Ituri where Ebola has also broken out, has been ravaged by conflict for more than 20 years.
There has been every reason to be suspicious. Outsiders, including government soldiers, have carried out massacres. When the government used Ebola as a pretext for refusing to let many in opposition-supporting North Kivu vote in last year’s general election, the suspicions crystallised.
However, the deployment of Ebola survivors charged with going from village to village and tell their stories in the same tribal tongue as their inhabitants is at last having an impact, aid workers say.
People are beginning to take the disease more seriously, bringing those showing symptoms to treatment centres and allowing professional health workers to manage funerals.
“There is a shift towards giving full responsibility for communication to the community,” said Franck Abeille, UNICEF’s senior Ebola project coordinator in Congo.
“It has a massive effect of people when someone goes to the community and says ‘this is what I went through and this is how I survived’. It is one of the most valuable assets we have.”
Because of improved treatment methods, especially if the disease is caught early, aid workers also have more survivors to call on. Of the 2,546 Ebola cases since the outbreak began, 721 have recovered — a huge amount of whom have indicated their willingness to join the fight against the disease.
Ebola has historically killed 90 percent of the victims it has infected. North Kivu’s high survival rate may in part be attributed to the role survivors themselves play. By just being there with patients struck down with the disease, the lullaby singers give strength to patients who may otherwise have given up the fight, Mr Abeille believes.
“The psychological component can be very important in your chances of survival,” he said “Someone who can be there and say ‘I went through all this’ helps a lot.”
Yet the willingness of so many to offer their services, is as startling as it is uplifting.
Aside from the ordeal they underwent, and the hesitation some must feel from working with people suffering the same disease, many are still coming to terms with deep tragedy.
Gentile Kahunia lost her six-year-old son and two-year-old daughter over the space of three days in March. Yet when she was discharged from the Ebola treatment centre in the town of Katwa, where 446 people have died, the highest in the country, she willingly agreed to work in its nursery.
“I am very proud to work here,” she said, as she cradled Benoit, a chubby-cheeked 25-day-old baby in her arms. “I wasn’t able to take care of my own children, but I now have the chance to take care of other people’s. It is a little miracle.”
Yvette Katungy lost her brother, grandfather and two young nephews a month later. Sitting on a bed on the other side of the room, Benoit’s twin brother Alphonse sleeping peacefully beside her, she nodded her head as Mrs Kahunia spoke.
“When I’m working here it takes my mind off all the deaths I have seen,” she said. “Keeping busy and doing something useful makes it easier to cope.”
Due to the stigma related to Ebola, the names of children in this piece have been changed.
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