A strange disease that attacks children aged between one and 12 years and makes them pass bloody urine is spreading rapidly in eastern Uganda. Moses Nampala visited Mbale Hospital and brings you the story.

Children aged one to 12 years, irrespective of sex, from a sizeable proportion of the eastern region, are increasingly developing peculiar malaria symptoms that render them to urinate blood until they are pitifully anaemic.

However, no amount of blood transfusion is adequate. Many are dying, while the few surviving ones are returned to Mbale Regional Referral Hospital after short intervals, upon discharge.

Araphat Waiswa from Ivukula taking care of his child, who is admitted in Mbale Hospital

The young patients that are brought to hospital scarcely respond to the conventional anti-malarial treatment regimen and present symptoms such as high fever, difficulty in breathing, convulsions and anaemia.

The epidemiology is largely attracting young patients from Elgon, Teso, Bukedi and, lately, Namutumba district in Busoga sub-region.

Physicians and scientists at Mbale hospital have called for resources from the Government and development partners to facilitate an independent research on the killer epidemiology that is decimating children at an alarming rate.

The in-charge of the hospital’s paediatric wing, Dr Julian Abeso, says the scale of daily admission of “black Water Fever” or “Dark Urine Syndrome Malaria”or “Haemoglobinuria” patients has reached a frightening scale.

Dr Julian Abeso

The ailment that has been silently, but progressively gnawing children in droves, has been around for almost a decade, but the cases have spiked.

“The situation is getting grimmer by the day. Something urgent ought to be done. Our daily admissions of children with this condition at the children’s acute ward alone, is between 13-16 cases,” Dr Abeso observes, as she checks the temperature of Evelyn Nahamya (six), one of the newly admitted patients, whom she had just put on blood transfusion.

It was barely 9:00am. However, to learn that little Nahamya was the fifth new patient to be admitted in the acute children’s ward would raise eyebrows.

Ninety-eight percent of young patients suffering from the strange ailment characterised by spontaneous and intense attacks die due to challenges of quick evacuation from remote areas, where the majority of troubled families hail from.

The fatality rate of the young patients, whose parents manage to make it to Mbale Hospital, apparently stands at 30% due to invariable salient factors, which include a patient reaching hospital late for their life to be saved.

Dr Peter Olupot-Olupot

The death toll at the hospital has also increased due to inadequate blood supply.

The director of the regional blood bank in Mbale, Dr Ahmed Bumba, attests that as custodians of blood that serves health public utilities in 24 districts, their service is increasingly getting overstretched by the epidemiology.

“Mbale regional hospital consumes 97% of blood units for children, of the total volume of blood we collect from the region,” he says.

No treatment

Also, no definite treatment regimen has been obtained yet for the disease. Physicians are strenuously trying to find the treatment as every individual case manifests differently.

“Case management of these young patients demands keen observation, but most importantly, impeccable professional innovation,” Abeso says.

In their little experience dealing with the ailment, majority of the children’s condition worsens when put on conventional anti-malarial drugs and antibiotics, notably quinine, coertem and panadol, among others.

The reverse is true when the treatment is summarily halted, leaving them with a very thin thread to hang on to.

“Many improve when we put them on Lumefantrine and Artesunate drugs,” Abeso adds.

Unfortunately, this is shortlived as the lone medical remedy cannot stop a child from slipping back into the condition (recurrence) after between three days and a week of being discharged.

Dr Ahmed Bumba

Prof. Dr Peter Olupot-Olupot of Busitema University’s faculty of health science, who has independently been researching on the strange ailment with 16 other eminent scientists from within and outside the country for the last 10 years, courtesy of funding from the Medical Research Council, UK, through the Medical Research Council Department of International Development concordat, gives a brief insight on the strange ailment.

Highlights of the latest preliminary findings, “High Frequency of Black Water Fever Among Children Presenting to Hospital With Severe Febrile Illnesses in Eastern Uganda”define Black Water Fever, Black/ Dark Urine Syndrome Malaria/ Haemoglobinuria as a high fever that is coupled with passage of dark or red-coloured urine (acute intravascular hemolysis) among children.

The study indicates that Mbale hospital, apparently the centre of excellence in the region on the ailment, is regularly attracting young patients from Mbale, Manafwa, Sironko, Namisindwa, Bududa and Bulambuli district (Elgon subregion).

Other districts include, Tororo, Butaleja, Busia, Kibuku and Budaka in Bukedi sub-region and Bukedea, Kumi, Serere, Soroti Ngora, Aleptong and Katakwi, among others, in Teso sub-region.

Most recently, the disease has started to ravage Busoga sub-region, an assertion backed by evidence of two cases registered at Mbale hospital that emerged from Namutumba, one of the districts that border Bukedi sub-region.

On reflection, Olupot-Olupot recalls that the earliest cases of the strange ailment were first detected at Mbale hospital a decade ago (2010).

“At the time, we treated it as isolated cases, but without losing track of its trend. Two cases were registered then in the same month,” he says.

From that time, the number of cases of children with the condition has been steadily and intensely growing, with alarming trends of the spike reigning in the last half of 2019.

The climax would come last year, with the number of patients shooting to up to over 10 from averagely seven to eight cases per day.

However, the spike of the epidemiology that coincided with escalation of the current global COVID-19 pandemic scare inevitably caused the strange ailment to get overshadowed, thus attracting minimal attention.

Olupot says the alarming spike trends experienced today may shock many, but not the scientists and some physicians in the region, who have closely been monitoring the matter over the years.

“To begin with, from several multicentre trials that have since been conducted by research scientists, it has unanimously been contended that the strange ailment be added onto the long list of ailments that haunt children in Africa, whose part of resuscitation regime of treatment warrants fluids as supportive treatment. Fluid Expansion as Supportive Treatment (FEAST) is a procedure that is in tandem with World Health Organization (WHO) classification,” Observes Olupot.

Clinical features of the dark urine

“In appearance, the urine passed out by the young patients has had more or less the same characteristics, with minor distinctions. Some patients pass out urine that appears blood-red, while for others, it is the colour of Coca-Cola soda or dark brown-black urine,” Olupot says.

Laboratory tests of the urine have yielded, among others, lots of dead red blood cells and high protein variables.

“Haemoglobin levels in the patients remain significantly low. Random sampling of patient-portion constituting of 318 picked from one area of the affected region, in a span of 48 hours, indicated that 282 patients that constitute 88.7% averagely consumed three units of blood transfusion during that time. However, continuous passing of dark urine pitifully leaves them anaemic, with a haemoglobin level as low as 20 mmol/L. Recent reports in medical journals have considered Haemoglobinuria to be a rare, but new (variant) kind of malaria haunting children in Africa, especially those living in high transmission settings.

The latest report on the international medical research platform to which the scientists undertaking research on the strange ailment ascribe, indicates that pockets of similar paediatric cases have been detected in Nigeria, Senegal, Papua New Guinea and DR Congo.

“In studies conducted in the DR Congo (DRC) and Senegal, evidence was found to suggest that exposure to quinine might be one of the critical factors causing the condition in children,” Olupot says.

In the current study, however, he contends that they have taken note of a wide range of geographic aspects in areas where the frequency of Haemoglobinuria has been observed to be rife, in a bid to widen the scope of finding the actual cause of cases presenting to the hospital.

Among other intricate areas the research has dwelled on in the affected area has been scrutiny of the nature of mosquitoes and their types, as well as the diet and water source points.

“However, preliminary findings have contrasted with a number of previous malaria reports as seen in the current context. Observing both historical and contemporary reports on malaria in children notwithstanding, findings of the research link the cause of the problem to the most recent antimalarial treatment drug regimen.

“A number of these drugs contain ingredients that adversely cast a heavy negative effect that cannot be discounted from being the primary cause of Haemoglobinuria in our current case series. Availability of resources that could bring the research to its final conclusion stands to establish evidence-based root causes and the standard mode of treatment for the patients,” Olupot says.

Parents speak out

A cross-section of parents, who are attending to their sick children at the children’s acute ward, Mbale regional referral hospital, have grim tales.

Nahamya’s father, David Wakhona, 45, from Bumbobi, Bughoko sub-county in Mbale, cannot hold back his tears.

“We were discharged last Friday. My daughter seemed to have recuperated from the disease after getting transfused with three units of blood. However, by Sunday morning, she had developed a temperature, only for her condition to worsen at night. I thought she might not live to see the next morning,” narrates Wakhona, who had to wait till Monday morning to find means of taking his daughter to hospital.

Francis Obwiny, 43, of Kabalamaja, Kumi district, who is taking care of his 10-year-old son, Daniel Ekwalu, in the same ward, says his son has had the condition ever since he turned five.

“I have lost count of the number of admissions we have had,” he says, staring into space.

Obwiny says the illness starts with a fever, which suddenly makes the child’s temperature to shoot up. In a couple of hours, the child starts urinating blood and sweating profusely. This is followed by the eyes and hands assuming a yellowish colour.

“On arrival at the hospital, the physician recommended immediate blood transfusion and that is how his condition gradually got better. I cannot stop wondering what drains blood out of my son.” he says.

Waiswa Araphat, 46, of Ivukula in Namutumba district, another parent whose four-year-old son, Yusuf Mugono, was among the morning admissions when Sunday Vision visited the hospital, said the same things the other two parents said.

The director of the blood bank regretfully observes that as the head of the regional blood bank, he is relieved when there is adequate blood supply.

“In my line of duty at the moment, nothing is as discomforting as receiving requests from Mbale regional referral hospital for blood units to save lives of children haunted by this condition when the stock has run out,” he says.

The in-charge of the hospital’s paediatric wing, Dr Julian Abeso, says besides children with these conditions returning to hospital just a few days after being discharged, they exude similar patterns of distinctive pointers.

“At the peak of the high fever, they (young patients) shiver, breathe with difficulty and sweat profusely once their temperatures eventually settle down, but only when they get the right treatment,” she explains.

The physicians on duty, she further elaborates, have learned to keep around the ward a little longer out of sheer necessity.

“This is because the strange condition demands a keen set of professional eyes, as well as sober mental stamina to make the right decision in the event that a patient fails to respond to the treatment formulas that we have since crafted and quickly switches to yet another one,” Abeso stresses.

The tentative crafted treatment formular for the strange condition has since been submitted to the health ministry.