Valérie Gruhn's compelling "Ebola Journal" from a February 2019 deployment treating patients in the Democratic Republic of Congo (DRC) was set to run in Warscapes prior to the current COVID-19 crisis. As Ebola is a very different disease than coronavirus, despite their infectious nature, we considered carefully whether it might create confusion to run the piece in the current climate. However, Gruhn's focus on the often overlooked need to connect with even the most seriously infectious patients on a human level resonate broadly today, as first responder (of which she is one) must navigate between compassion and care for their own safety and health. We ultimately made the decision that a lot can be gained from her insights. -- Editor's note by Michael Bronner.
On March 3, 2020, a patient thought to be the last in the Ebola outbreak that had been ravaging the Democratic Republic of the Congo (DRC) for nearly two years was discharged from a treatment center, beginning an anxious 42-day countdown: No new infections reported in this period would mean the world’s second deadliest Ebola epidemic, which claimed 2,264 lives, was officially over. However, just days before the countdown expired, a new case emerged in Beni, DRC, sending teams left in place for such a contingency scrambling to trace the patient's contacts and tamp down further spreading - a reminder of just how tenacious infectious diseases can be.
The largest global Ebola epidemic, predating the current outbreak, burned through West Africa from 2014 to 2016 and claimed the lives of 11,300 people. Afterwards, measures were taken to better combat the disease. The care of Ebola patients, in particular, needed to be rethought. Many experts joined the effort and worked to prevent another such catastrophe. This laid the foundation for innovation.
The layout of Ebola Treatment Centers (ETC) was redesigned to give patients more freedom of movement, while still keeping everyone safe. With this new design, families can see their loved ones through windows made of Plexiglas or walk out to talk to them with only an orange plastic mesh fence, and a few feet separation between them. New approaches were conceived incorporating cubes with transparent walls and external arm entries, enabling medical staff to provide care for patients without having to enter the room or wearing personal protective equipment (PPE). These measures reduce the risks associated with exposure. Medical care has improved, and patients are provided with more dignified care, by promoting touch and providing better symptomatic treatment. Four Ebola-specific drugs were developed, with the two most efficient still currently being trialed. A vaccine was recently approved and found to be 97 percent effective against Ebola.
The recent outbreak in the DRC began in August 2018 in Mangina, a small town in North Kivu, setting the stage for these innovations to be put to the test. On July 17, 2019, after the first Ebola infection was reported in Goma, the capital of the North Kivu province, the World Health Organization (WHO) declared the outbreak a public health emergency of international concern. The response has included the deployment of new vaccines and treatments and improvements in the medical management of the disease.
I worked as a nurse for ten days with Doctors Without Borders/Médecins Sans Frontières (MSF) in Katwa, North Kivu, in early 2019 – until two attacks on our Ebola Treatment Centers forced us to evacuate. By the end of 2019, there had been more than 300 attacks on Ebola health workers, resulting in six people killed and 70 wounded. Care was continued by other actors, including the DRC’s Ministry of Health and the WHO, but was often interrupted by attacks. MSF returned to the region several months later, engaging in non-Ebola care..
The following diary entries, written in early 2019, reflect my personal experience at that time. Some of the conditions described have changed since.
15th- 17th February 2019: Goma
First stop, Addis Ababa, Ethiopia. Second stop, Entebbe, Uganda. I finally arrive in Goma, Democratic Republic of Congo. This is not my final destination. Every few days, ten- to twenty aid workers are flown in from all over the world to work in the current Ebola epidemic that is spreading throughout North Kivu. Experts from diverse backgrounds, such as nurses, doctors, epidemiologists, anthropologists, logisticians, water and sanitation engineers, and Ebola specialists are needed in this challenging setting. A queue forms at the water station before we are able to enter the airport to get through customs. We wash our hands with a solution consisting of water and chlorine. Next, we have our temperatures checked with a laser thermometer pointed at our foreheads: I clock in at 36.4 degrees Celsius (97.5 degrees Fahrenheit).
Lake Kivu lines the outskirts of the city with Mount Nyiarangongo, the active volcano in the Virunga mountains, painted in the horizon. The scenery is strikingly beautiful. Music fills the air in this city, along with friendly exchanges, dancing, and laughter.
18th February 2019: Goma to Beni
We took an early morning flight to Beni. The outbreak officially started in August 2018 in Mangina, a town North of Butembo. Laboratory tests confirmed that the virus was the Ebola Zaire virus. However, this strain was different than the virus that had just been eradicated several months earlier in the Équateur province of DRC. This was a separate outbreak. Over time, positive cases started appearing different regions. MSF set up ETC’s or transit centers in these areas as soon as the Ministry of Health notified us that Ebola had re-emerged. At the moment, the epicenter of the outbreak lies between Butembo and Katwa.
North and South Kivu have over 130 different active armed groups, the instability tracing to colonial-era interests in the immense amount of wealth found in the country. Gold, diamonds, cobalt and other natural resources continue to be in high demand globally, contributing to infighting and decades of unrest. This makes North Kivu a complex setting, with both protracted and acute emergencies which only further test the strength and resilience of its people. MSF has been working in these areas for over thirty years, making us quite familiar with the challenges that come with working in this environment.
I chose to work in North Kivu, and on the Ebola response in particular, mainly to help put an end to the spread of the disease. I want to help improve the quality of care for Ebola patients, and elevate that care to higher levels than we have previously managed. But most of all, my goal is to help bring back a sense of humanity to people who lost everything; their families; their belongings (burned to prevent further contamination); and their rights.
February 19, 2019: Beni - Katwa
A two-hour car ride finally brought us to Katwa, where I will be working. Rust-colored roads etched on a mountainside give us a view onto the Virunga rainforest. Small villages built with the same rusty mud as the road appear between the greenery. This is one of the most beautiful countries I have ever seen.
We approach a checkpoint, get out of the car, wash our hands and get our temperatures checked once again. We cross a checkpoint by foot and meet another car on the other side and continue our journey. People stop to stare at our vehicle and mouth E-B-O-L-A. Hidden away, between large tree trunks, are flashes of orange that appear through the thick morning fog. This is the ETC.
February 19, 2019: Katwa
The ETC is set up on a side road in the middle of a forest, away from the craze of the city. It is the size of a football field, and within it is a complex maze which separates a high-risk zone from the low-risk zone. A passage is made in between for families to visit their loved ones. In total, there are seventy rooms.
I wash my hands with chlorinated water and use some of that water to clean the tap handle before I turn the faucet off. Someone sprays the soles of my feet – first right, then left – with the same solution. I get my temperature checked and my name gets placed on a board that marks me as being in the ETC. I change into a pair of green scrubs and white boots—the outfit we wear when in the lower-risk areas—and exit the changing room to find everyone dressed as I am.
I did not know what to picture when I thought of an Ebola patient; I had never seen the disease up close until now. I walk over to the zone for suspected cases to orient myself with the hospital I will be working in. A child no older than two years is sitting on a bed with her mother, waiting for confirmation of their test results. Both of their backs are turned to me. I knock on the Plexiglas window to get her attention. Here, we stay in our scrubs and patients can see our faces. The little girl immediately bursts out laughing when she sees me.
In another room is a nine-year-old boy lying down on his bed, his back turned to me. The rooms of suspected cases are filled with men, women and children, all waiting for what may be a death sentence. I eventually walk over to the “confirmed” area. One woman there is very weak but still responsive, with a fever and complaining of chills and abdominal pain. There are no hemorrhagic symptoms. This woman looks exactly like so many sick patients I have taken care of back home.
February 20, 2019
I don the Ebola Personal Protective Equipment - the PPE - and accompany two nurses. We begin patient rounds. There is a heavy downpour. We each grab an umbrella to protect our goggles from fogging, or any piece of our PPE from slipping. One person opens the fence, which gives us access into the suspected zone, which we first have to walk through in order to get into the confirmed zone.
We walk into the room of the woman I saw yesterday. However, this time around, I am on the same side of the Plexiglas as her. From the other side of the window, two nurses stand watching us and keeping track of time. Moving around in the PPE and providing nursing care this way is complicated. I feel myself moving in slow motion, and the heat within the suit and the carbon dioxide I am inhaling from my mask is keeping me from thinking as sharply as I usually would. The nurses are directing us, but their voices sound muffled. The woman’s clinical status has dramatically declined over the last twenty-four hours. She has stopped urinating and has difficulty breathing; she is in renal failure. We give her intravenous fluids and pain medication as I try to reposition her in the bed so she can breathe more easily. I feel guilty that I do not have resources available that could possibly save her. I feel guilty that I am dressed the way that I am, and that the last person she will see is a random stranger wearing what looks like a yellow spacesuit. I feel like I am treating a disease, a biosecurity threat, rather than a person who is a mother, a daughter, and more importantly, a human being.
On the opposite side of the ETC are a group of people singing, dancing, and playing drums. After I undress, I walk over to see what is happening. Two women who survived the disease are there; they can finally go home. Everyone is happy and the medical staff is dancing and singing along. The aspect of one of the survivors quickly transforms; she seems suddenly far from the festive atmosphere. The pensive look on her face makes me wonder what she is thinking of. Is it going back out into her community, fearful of being stigmatized? How does one move forward? Surviving the disease may be more frightening than contracting it. One of the women looks back one last time as she leaves, leaving behind the disease she survived and the memories of the husband she lost to the same illness.
Several hours later, the woman I’d cared for earlier dies.
February 21, 2019
I like to walk through every block and greet every patient. This way I can see their evolution and have a human moment with them. Adama (not her real name) is a precious seven-year-old girl; she is my favorite. Parents are unable to stay with their children until their Ebola status is confirmed. In many cases, it was the parents that infected their children, and they may have already passed away from the disease. For these children, Ebola survivors (who cannot contract the disease again) become their caretakers at the center. I like to play hide and seek with Adama. I put my hand against the window as she puts hers against her side to touch mine. That is the closest contact I can have with Adama if I want her to see that I am actually smiling and laughing with her.
We have three confirmed Ebola patients in our treatment center at the moment, with several recovering patients. One is a woman in her forties. She walks around and has a good appetite. It seems like she will recover in no time. When we walk by to check on her, she gives us the thumbs up, but complains that the food is horrible.
A man in his forties is being observed in a room we recently set up with a monitor that we can manipulate from either side of the window—the high- or low-risk zone—to take his vitals. He is already showing signs of renal failure, which is a late sign of the disease. People continue to arrive very late from the first onset of their symptoms, which may decrease their chances of survival. At that point, even with one of the four developmental drugs being administered through a randomized control trial—a collaboration between MSF, the World Health Organization (WHO), the National Institutes of Health (NIH), and l’Institut National de Recherche Biomédicale (INRB)—it is a miracle if someone like this makes it out alive. This patient is receiving one of two developmental drugs. I constantly have a team rotating through his room; his vitals often reach critical levels. We are fighting to keep him alive. So is he.
During the night, a pregnant woman was transferred to us with a confirmed test result. Her husband had recently died in our center, a death that many described as violent, the man passing away in a pool of his own blood. He had uncontrollable hemorrhagic symptoms, and I was afraid that his wife and unborn child would suffer the same.
February 22, 2019
In December, DRC’s Independent National Electoral Commission decided to exclude Ebola-affected regions from voting in the presidential election in an effort to prevent the outbreak from spreading. Many people in the community saw the move as a political ploy and have become increasingly suspicious of us.
As more and more international responders arrived and more money was poured into the response, more rumors started circulating: “The response is benefiting outsiders…”; “Ebola does not exist!”; and, “Westerners brought in Ebola!” Even the laser thermometers we use to check people’s temperatures became, to the conspiratorially-minded, a tool that “puts thoughts into people’s minds to vote” a certain way. The ETCs became known as “centers where people walk in alive but come out dead.”
Too many actors are involved [in the medical response], and the messages that get disseminated are confusing and contradictory. People are afraid to go to health centers for other illnesses. People are dying at home, rather than seeking treatment. Many more are fleeing to other cities, unwittingly spreading the disease to new regions. Those who do arrive to ETCs often arrive so late into the illness that we are unable to save them.
Aggression against any symbol of the international response effort started with the stoning of passing NGO vehicles, but soon spread to attacking medical centers, and eventually to attacking health workers. People in the communities in the affected areas are criticized, and often blamed for being resistant. Victimized by the politics of fear, these people want answers to tough questions: “Where were you all when our families were being massacred and our children were dying of other diseases?”
During the course of the day, the ambulance brought in a dead young woman. We had to keep her body until we could determine the cause of death. A test determined that she had died of Ebola. Her family was frustrated that she was brought here to the ETC, and that they had to wait to bury her, creating tensions with her family and others from the community. Can you blame them? We had to keep her displayed in a body bag in our morgue for the family to see that we are not “harvesting her organs,” as many rumors speculate.
I needed a break. To step outside of the ETC is a process: I wash my hands (again), get my soles sprayed (again), and have my temperature checked (again). I notice a crowd of local people lining our center, watching and talking skeptically. A little further, kneeling on the ground in the field, is the young woman's mother. She is screaming and crying from the pain of not only losing her daughter, but losing also every bit of control she would have had over her burial under normal circumstances.
The remains of the MSF Ebola treatment center in Katwa after an attack in Feb. 2019 (Laurie Bonnaud/MSF)
February 23, 2019; Morning shift
I put on the PPE to make my patient rounds with the nursing staff. The first room has twin eighteen-month-old girls that are suspected of infection; they present with three of the wide arrays of symptoms that indicate Ebola. One of the girls has an ear infection, and the other is dehydrated. Neither of these girls should actually be here. The list of symptoms people display when they have Ebola is long and mirrors many other illnesses; diseases such as malaria, and symptoms like watery diarrhea, are common in this area. Nausea, vomiting, headache, diarrhea, joint pain, abdominal pain, fatigue, hiccups, etc… The list goes on.
It takes over an hour to get intravenous access. We go past the time we are supposed to stay in PPE; it is time to leave. I walk over to Adama’s room. Afraid she will not recognize me in PPE, I introduce myself and ask her if she recognizes me. She nods “yes.” I put my arms around her as she hugs me back. At that moment, we both feel like human beings again.
February 23, 2019; Afternoon shift
The man with renal failure is deteriorating. I try to catch his attention by miming a gesture to turn his head right to see his brother and father. They visit him every day and stand behind a fence for hours in hopes of seeing him improve. He is unable to turn his head towards them on his own, so the staff helps him. I watch as he and his family wave to each other. Is this really their last goodbye? A distant wave instead of a last hug and kiss. I walk away to hide my tears.
After several discussions as a team, we decide to bring the patient’s father and brother into the low risk zone to sit by his window and interact a bit more closely. The brother is shaking; I am not sure if it is from sadness or from fear. “We are doing, and will continue to do, everything we can for your son and brother,” we tell him. We update them on his current status, and encourage them to ask questions. “Thank you, we trust that he is in good care,” says the father.
February 24, 2019
The team decided to take it slow today. We are tired. One week here has felt like months. Fifteen hours feels like days.
Although the activity of the hospital has drastically declined in the last week, we hear of more and more people dying at home. This means that community deaths are increasing, and people are not coming to the hospital. They are afraid, and many say they do not believe that Ebola exists. Rumors about the international response have intensified, and the community does not trust us.
The front entry area of the hospital is also eerily quiet. No one is around. The usual crowd that had assembled each the last few days is nowhere in sight. “Today is Sunday – people go to church, and will come back afterwards,” I tell myself. Why would people suddenly stop coming around?
February 25, 2019
I woke up to the news that our treatment center was attacked overnight and set on fire. Unable to withstand the blaze, parts of the hospital now lay in ashes. Fifty staff are now sleeping on mattresses we set up on the floor of the wedding hall of the hotel we reside in. Everyone is safe, thankfully, except one unknown person that was found dead nearby.
Part of the team went to the hospital last night to evacuate the patients, who are now split between two other centers. I went to MSF’s ETC in Butembo to follow up with the patients we transferred. The man with renal failure actually survived the transfer. He is in the process of converting from positive to negative. However, he will not survive the damage that has already been done to his kidneys.
Other colleagues returned to decontaminate the hospital and salvage supplies. Our health promoters are going out to get any information they can from the community, and the coordination team is having meeting after meeting. We try to remain calm and proactive and get through this moment as smoothly as possible.
Suddenly, while we sit in the courtyard, music that resembles a drumline begins playing right outside our gates: With trumpets and drums, the community is celebrating.
February 26- 28, 2019: Katwa - Goma
The majority of the team was evacuated early in the morning in groups. Some people took a helicopter to Goma, while a skeleton team stayed behind in order to finish up some work.
When it was my turn to leave, I looked back one last time at the city that did everything in its power to protect itself from “La Riposte” (“The Response”).
Behind every “case” is a child that is brought into a center and separated from her parents. Behind every “case” is a pregnant woman that lost her husband to the disease and was infected while caring for him. Behind every “case” are people that are afraid—afraid to lose their limited belongings; afraid they will not be able to celebrate the lives of their loved ones when burying them; afraid that they will be taken against their will into a treatment center they will never come out from alive. We continue to focus on only these people – the ones who were infected, and their families, who we refer to as “contacts.” However, we miss everyone else who lives in the community in fear of becoming the next "case." We speak of survivors as those who survived the disease, but not of the people who survived the violence of their past and the new hostilities we created.
Ebola destroys the entire social fabric of a community. How could it have come to this?
If the message that we spread is “Ebola kills,” what reason do we give people to come seek medical care? Why are we only speaking about Ebola in a community that suffers from so many other and equally devastating things?
The messages that we disseminated lacked hope, while the international response could have been delivered with higher levels of humanity. We could have done much better for this community. We could have better fulfilled their needs and eased their suffering. As a result, we failed to gain the people’s trust. In the end, the community fought what it considered to be a greater threat than Ebola – the international response.
Valérie Gruhn is an emergency trauma nurse, writer, and humanitarian aid worker. Gruhn’s public health work has taken her to the Philippines and Gaziantep, Turkey, where she worked on the Syrian Refugee Crisis. Gruhn has worked with Médecins Sans Frontières (MSF) since 2016, and has worked in Kenya, Chad and Iraq. Gruhn recently worked on the Ebola epidemic in the Democratic Republic of Congo.
A version of this piece was initially published in the Reuters Foundation in May, 2019. For an updated overview on MSF’s activities, as well as the latest medical developments linked to the Ebola outbreak in DRC, please refer to: https://www.doctorswithoutborders.org/what-we-do/news-stories/story/ebol...