Hepatitis what? E? “I’ve never even heard of that!” I heard this statement over and over again when speaking to friends and colleagues back home. It isn’t surprising, Hep E is not at all common in the developed world. For future reference, and to dazzle your friends at any cocktail party over the holidays, there is hepatitis A,B,C,D & E (so far). Hepatitis D requires a hepatitis B virus for its replication – go figure!
According to the World Health Organization (WHO), there are 20 million cases of HEV worldwide and of those, about 3.3 million are symptomatic. “HEV infection is found worldwide and is common in low- and middle-income countries with limited access to essential water, sanitation, hygiene and health services. In these areas, the disease occurs both as outbreaks and as sporadic cases. The outbreaks usually follow periods of fecal contamination of drinking water supplies and may affect several hundred to several thousand persons. Some of these outbreaks have occurred in areas of conflict and humanitarian emergencies such as war zones and camps for refugees or internally displaced populations, where sanitation and safe water supply pose special challenges.” (WHO) So you can imagine, here in a refugee camp, we are ripe for a HEV outbreak and that is just what we have now.
Last Sunday, a woman brought her sister in to the hospital ED and that department brought her to us because she was pregnant. They think anyone who is pregnant should be seen in maternity regardless of their chief complaint. “Um no, this patient has an abscess on her foot, this is not pregnancy related”, I have been known to say. Then dejected, the nurse takes the patient back to the ED. But this particular patient was a mystery. We could see she was pregnant but she was agitated and uncooperative and we were unable to even examine her because she would scream and finally threw herself on the floor and rolled around screaming anytime anyone came near her. Her sister brought her in because she had been acting strangely and had periodic bouts of screaming for the last couple of days.
I knew this patient did not belong in maternity not only because her illness was not pregnancy related but also because we were full and she was frightening and disrupting all of the other patients. We don’t have a psychiatric unit, although we do have a mental health department but they do not work weekends. I needed to get her to calm down so we could take her to another place where she could be examined so we could try to help her. I called the pharmacy for haloperidol but it was ruptured. So the next best thing to try that I had on hand was diazepam. It took 4 people to hold her down so we could give her the injection. It did help slightly and she was calmer but still not responsive when spoken to.
I called the MD on call to help me deal with the patient and transfer care. He came and we made the decision to take her to TB isolation. There she could be in a room alone where she was not a threat or disruption to others and she could be examined and treated. We wanted to know if the pregnancy was viable, among other things.
We asked the sister about her history. She was 20. This was her second pregnancy, the first was term twins and both were still alive. She had had no recent trauma, injury, accident, illness or any other incident that might have triggered the symptoms. She continued to be agitated after being brought to isolation so she was given another injection of diazepam so that I could do a quick ultrasound to check the baby. There was a heartbeat and it looked to be about 27 weeks.
In the meantime, we also got blood drawn. The MD suspected HEV because once we could examine her, we saw her eyes were jaundiced. Of course we tested for all hepatitis and malaria. Everything came back normal with the exception of the ALT which was elevated – 1376 (should be no more than 55), and Hep B & E, which were positive. So we had our diagnosis which explained her symptoms – hepatitis E encephalopathy. She would not recover. Her brain was swelling and her liver was failing and it was a matter of time before her body completely shut down.
The family gathered and were informed of her condition. She was to be given palliative care which included morphine. A DNR was added to her chart at the family’s request. I check the fetal heart rate every 6 hours or so. We did not know if the baby would be expelled or not. The last case we had of a pregnant woman with HEV, the baby did expell. It was about the same gestation. We had to be prepared for the same thing to happen. The heart rate was stable during the first 24 hours but as the mother started to deteriorate, there was fetal distress and the heart rate was in the 190’s. I knew the next time I went to listen, it would no longer be there.
The decision was made not to intervene with the pregnancy, either by induction or c-section. It would not change the prognosis for the mother and the baby may or may not be able to survive at the current estimated gestation.
Pregnant women with hepatitis E, particularly those in the second or third trimester, are at increased risk of acute liver failure, fetal loss and mortality. Up to 20–25% of pregnant women can die if they get hepatitis E in the second or third trimester. We have seen this to be true here in our project. We have had 4 pregnant patients in the last year very similar to this, although not presenting with symptoms of agitation and disorientation like this one. All of them died within a few days of presenting at the hospital. Some studies have shown a three times higher relative risk for fulminant hepatic failure and a six times higher risk for mortality for pregnant patients.
Typical signs and symptoms of hepatitis include:
- an initial phase of mild fever, reduced appetite (anorexia), nausea and vomiting lasting for a few days;
- abdominal pain, itching , skin rash, or joint pain;
- jaundice (yellow color of the skin), dark urine and pale stools;
- a slightly enlarged, tender liver (hepatomegaly).
As it turned out, I did not have to check the fetal heart rate again, there was no next time . She died in the night and her baby died along with her. Her family was there. Her suffering was thankfully short. Still, it was incredibly sad. She left behind a family, including a husband and 2 year old twins. The cause of death was hepatic encephalopathy with acute liver failure.
When I am asked what is the usual cause of death for women during the childbearing year when I am on assignment, it is usually hemorrhage or infection. But there are other things, incidental to pregnancy that sometimes we can do nothing about. Even if this woman had sought care sooner, in the early phase of the illness, it is likely the outcome would have been the same. It is frustrating and sad. I allow myself those feelings for a few minutes and then I let them go and move on to the next patient. There is always someone else waiting to be helped and this is where I put my energy and focus. It is the only way I survive.
***For more photos from the field, you can follow me on IG @globalmidwife64 ***
