“You’re just doing your best as a doctor, but basically you’re half blinded.”

February 13, 2013

“You’re just doing your best as a doctor, but basically you’re half blinded.”

Maarten Dekker is a Dutch medical doctor working in Batil, one of four refugee camps currently affected by an outbreak of hepatitis E in Maban county, South Sudan.

Hepatitis E outbreak escalating in Batil camp

The first hepatitis E cases were reported in Batil camp in July last year. When I first arrived here ten weeks ago, the number of cases had been going down, so most people were expecting that we were out of the emergency phase. But in the last three or four weeks, the cases have really started going up again. Last week we had 494 new cases, compared with 271 two weeks before. And you can also see the number of admissions in our hep E ward going up – from 16 to 23 to 46 per week. On a single day, we had 26 new admissions. The number of deaths is going up slightly as well. When I arrived it was about one or two per week, then we had four, then seven, then last week we had eleven inpatients deaths.

Hep E is a disease that affects the liver, and there’s not a lot known about it. It’s beyond the usual scope of NGOs, the World Health Organization, basically anyone. I had never treated the disease before coming here. At this time a lot of people are working on trying to understand the disease better. We are formulating our own ‘working protocol’ for optimising supportive care in this setting, together with several internal medicine specialists from around the world.

No cure for hepatitis E

There’s no cure for hep E, we can only give supportive care to treat the symptoms and prevent some of the complications such as bleeding, low blood glucose, dehydration or infections. The real thing that’s killing people is liver failure. This is something we can’t treat. And that’s frustrating, really frustrating. You’re just doing your best as a doctor, but basically you’re half blinded.

When the person has a lot of toxins in their body because their liver isn’t functioning properly, they come in very confused or with an altered mental state. They usually go into a coma for about four or five days. Then it’s 50 or 60 percent who survive. They recover, or they die.

Coping with death

In the time I’ve been here, I’ve witnessed about 20 deaths. As a doctor it’s strange because you kind of get used to it, to people dying. The first deaths are frustrating, then you build a wall inside your system so you don’t get too emotionally involved. Of course, building a relationship with your patients is important so you understand each other. So you try to find a balance between bonding with your patients to be able to help them and to be compassionate, and at the same time not becoming too emotionally involved. Otherwise you’re not able to work anymore. It’s difficult.

Unusually, it’s really the young, strong generation that’s affected the most. It’s young guys, just like me – 20, 25, 30 – who are dying. It’s young men, young women, but not a lot of children or people over 40.

Pregnant women most at risk

If you look at the overall mortality, of every 100 patients, two of them will die. So the case fatality ratio is about two percent. In pregnant women, it’s about 20 percent. And why is that? We really don’t know. We’ve had women who have given birth and then afterwards they’re fine. And we have a number of women who have premature babies. And then in other cases, the baby survives, but the woman doesn’t.

I’ve seen just one emotional outburst after a death in the ward. But usually after someone dies, the family just want to go home as soon as possible. I don’t know how they do it, but within minutes they organise 15 people to carry the body or we supply them with a donkey cart to transport the body home. I think it’s very hard for them not to have their family members at home when they’re dying, but having them die in a hospital. Sometimes when a patient dies, the family comes over and says “thank you, thank you, you tried”. And sometimes you see this agony in their eyes.

Fears of an epidemic in Doro camp

Sometimes as a doctor you have the feeling that you’ve failed. You’ve not been there at the right time, or you’ve not given the appropriate treatment at the right time. Personal failure is the thing that hurts me the most. With hep E, I haven’t had the feeling that I have loose ends, or have made major mistakes. We gave all of them the optimal treatment available. But we still lose people.

We had some doctors here from the MSF hospital in Doro camp, not far from here. They’ve recently seen a number of suspected cases of hep E and came to learn how we are managing the patients here. There are around 45,000 people living in Doro. I’m afraid the same thing will happen there as has happened here and that they’ll have a long-term hep E problem.

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