Babirye Zainab, just six years old, had experienced malaria several times, though her grandmother didn’t see it as a big issue. “I’ll just treat her with anti-malarials, and she’ll be okay,” she reassured herself.
But things took a turn when Zainab developed a fever and started having convulsions. The worried grandmother noticed her granddaughter’s urine had turned a dark color, prompting her to rush her to a nearby health center.
After being discharged from the hospital, Zainab experienced similar episodes a month later, leading to multiple instances of brown urine, concerning her grandmother greatly.
This condition reflects a larger medical mystery in rural Uganda. Zainab suffers from Black Water Fever, a rare complication of malaria that researchers are keen to understand. The condition gets its name from the dark, blood-tinged urine that can be life-threatening.
Black Water Fever occurs when red blood cells break down excessively, releasing hemoglobin into the bloodstream, which can then be excreted in the urine. This can lead to anemia and yellowing, sometimes requiring blood transfusions.
Professor Kathryn Maitland from Imperial College London, who is based in Kenya, first noticed an increase in cases nearly a decade ago among children in eastern Uganda.
In research published in the Journal of Clinical Infectious Diseases, her team noted that this condition was previously uncommon. They speculated that it might be associated with the recent introduction of artemisinin-based combination therapies, which are now the standard malaria treatments.
Since then, Maitland has been tirelessly investigating, remarking, “We’ve been digging, digging, digging.”
Historically, Black Water Fever was often seen in Europeans who took small doses of quinine as anti-malarials, but its rise in Africa is alarming.
“What’s very interesting about African children is that if you have one episode, you tend to get it over and over again,”
Maitland observes. “This wasn’t highlighted in WHO guidelines for severe malaria. It was labeled as very rare, yet it’s becoming more frequent.”
Her research suggests that genetic factors like sickle cell traits or G6PD enzyme deficiencies may heighten the risk of this condition, but they haven’t proven conclusive.
There’s a theory that the malaria medications used in some parts of Uganda could be substandard or counterfeit. “The medicines are generally good, so we keep circling back,” she adds.
Maitland believes the best explanation lies with artemisinin-based treatments, grounded in the experiences of local healthcare providers.
When children with Black Water Fever are admitted to hospitals, especially in cases where there’s an outbreak or concern of something like Ebola, it can create significant alarm.
The stakes are high for affected children, who are at “great risk of death,” often needing multiple blood transfusions, raising the chances for side effects and extended hospital stays.
“It’s fascinating that if a child gets one episode, they seem to be susceptible to recurring cases,” she notes. “Perhaps, each time they get infected by malaria, Black Water Fever emerges again.”
Zainab has been experiencing these episodes every few months, according to her grandmother. Since she turned eight, health issues have prevented her from continuing school.
“I often have to take Zainab to a medical center given her fragile health, and she’s had to drop out of school because of illness,” her grandmother laments. “Sometimes, when she falls ill, I might be in the hospital for a week.”
There are times the family struggles to find medication and may have to seek care privately. If Zainab requires a blood transfusion and local blood is unavailable, they face the daunting prospect of moving her to a “very expensive” facility.
Currently, the pair is involved in a research initiative led by Jane Francis Zalwango of the National Institute of Public Health in Uganda, who is studying cases of Black Water Fever with funding from a global healthcare organization.
Zalwango mentions that Uganda is still developing its disease monitoring system. Thus, while the figures aren’t complete, the trends indicate a worrying rise.
The study has already recorded 400 children in Budaka district. Initial checks revealed that half had clear indicators of Black Water Fever, while the other half had malaria without severe complications. They’ve been monitoring blood samples for immune system markers over several months.
Dr. Mary Rogers, an associate researcher at Abbott, stated that the program included various hypotheses, including the possibility that genetic factors or co-infections could play a role.
While discussing the trials with affected families, Zalwango found the conversations were heartbreaking. “They are always anxious about what might happen next,” she remarked.
There are also traditional beliefs surrounding Black Water Fever, which can further complicate matters. “Some families delay seeking medical help due to superstitions; they might think it’s some form of magic,” she noted.
However, through interactions with healthcare providers, there’s been a gradual shift towards better understanding and earlier treatment to mitigate risks.
Zainab’s grandmother holds on to hope that this research could lead to effective treatments. “The doctors have explained that it’s malaria causing this issue,” she says.
“Maybe they’ll find a way to prevent other children from going through this,” she adds hopefully.
