It is a bright April 7 Good Friday morning at Wamulingane village, in Tala, Kangundo, Machakos County.
As we make our way through the dirt road off the Kangundo-Machakos highway, the vast fields enveloped with green maize signal an area brought to life by the ongoing rains.
But at Mr John Ndaka’s homestead, despite the prospects of the upcoming bumper harvest, it is all gloom.
For two years now, their joy has been shattered by a strange illness that has bedevilled their 15-year-old second-born daughter.
Since January 2021, the life of Hellen Mueni Ndaka has been a nightmare. The Grade Eight pupil at Kyaaka Primary School has been suffering from a rare condition, which has left even doctors baffled.
Her illness is characterised by episodes of abnormal bleeding with blood oozing from her eyes as tears, and at times haemorrhaging through her nostrils, ears and occasionally from her mouth. And lately, from the fingernail bed.
According to Mueni’s mother, Mary, this is normally accompanied by bouts of body aches and weakness. “When she starts bleeding, especially from the mouth, she becomes so weak and at times slips into unconsciousness,” she explains.
Her bleeding can go on for days, and when this happens, they have to watch her closely. At times she faints and they have to rush her to the hospital.
What is even more frustrating for these parents is that they have no idea exactly what causes or even triggers the bleeding. “She could be just seated somewhere doing her simple chores, and then the episodes begin. When they do, they don’t stop,” says the father.
Sometimes, they say, the bleeding can start from just dirt entering her eyes, or too much concentration on her books. This has affected her studies.
School woes
Due to her condition, she hasn’t had a normal school day for more than two years now. “She goes to school on and off. The last time she showed up in class was in February this year. That day she went to school and started bleeding. We were called to pick her up. The next day she went back again, but this time she bled until she fainted.”
According to Mr Ndaka, when Mueni concentrates, her bleeding gets worse and when this happens at school, she attracts the attention of other pupils, which interferes with class proceedings.
Due to this, he says, they resolved to pull her out of school and concentrate on her health.
The condition has dealt a blow to the girl’s academics as her parents helplessly watch as their once brilliant daughter continues to dwindle in her academics. “I used to be top four in my class before, but not anymore,” says Mueni.
At the moment, she is not sure whether she will sit for her Kenya Certificate of Primary Education (KCPE) exams at the end of the year. “Initially, when the condition started, I could go to school from the wards, but then when things got worse, the teachers saw it was best for me to seek treatment and then get back to school,” she explains.
But the problem is, Mueni has no idea when and if that will ever happen.
Back at home, this strange illness has alienated the Ndakas from most of their neighbours. “People are scared to come over or even let their children play with ours, afraid that perhaps the condition could be contagious,” her mother says painfully.
As for Mueni, she no longer has a social life, and so when she is not trying to study, she is playing with her dolls.
Her mother says the girl cannot be left at home alone. “When her father leaves I have to be with her because the bleeding can start anytime. This means that I cannot even run the simplest errands like fetching water, because I have to keep an eye on her throughout,” explains Mary.
She says they have constantly remained heartbroken, unable to get their daughter answers about what is ailing her.
The illness has also continued to eat into their finances. Mr Mutua, a matatu driver and the sole provider of the family, has seen whatever little financial resources he had to disappear over the years.
“Initially we had a taxi but we had to sell it to settle the accumulated hospital bills. We also had to sell the two cows we owned to buy her medication,” he adds.
The prevailing harsh economic times have made life even harder for the Ndakas.
“At work, business is bad. The matatu I used to operate broke down and now I only rely on irregular shift calls from other drivers, meaning that my pay is not guaranteed.”
Yet Mueni cannot use public transport when going to the hospital unless she covers her face. “There have been times that other passengers have run out of the vehicle fearing that she has Ebola,” the father recalls.
Private transport is also beyond their reach at the moment. “Commuting from the village to Kenyatta National Hospital in Nairobi, where she is currently undergoing treatment and tests, is quite expensive. In most cases, we cannot go the three of us. I have to go with her while her mother stays at home,” explains Ndaka.
Financial constraints
Due to financial reasons, they have been forced to postpone and, in worse scenarios, miss hospital appointments.
To try and cushion the family from the financial burden occasioned by medical bills, previously they organised two fundraising events but still, they couldn’t raise enough money. This has left them chocking with debts in instances where the National Hospital Insurance Fund (NHIF) has not been helpful.
“We have resorted to taking loans to supplement financial gaps whenever we cannot get service with the NHIF card. There are services that are not catered for by the NHIF card, thus often, we have found ourselves making payments from our pockets.”
Meanwhile, as things stand, this family cannot afford to buy the prescribed drugs.
The problem started in January 2021 when Mueni was in Grade Five. It was a late afternoon Friday during a study break and she was in the classroom doing revision. “Then suddenly, a fellow pupil stormed in and started playing with a tennis ball. As he threw it on the blackboard, it bounced back and hit me on my right eye and I started bleeding,” Mueni recalls.
The bleeding didn’t stop and so she had to be taken home. Her parents rushed her to a local dispensary. “The medics administered first aid and also gave her some painkillers but then advised that we take her to Kangundo Level Four hospital, the next day,” explains Mr Ndaka.
At the hospital, following an examination, some eye drops were prescribed. She continued with the review for nearly two weeks, but her condition never improved.
In February, she was then referred to Machakos Level Five Hospital, where she was treated for close to a week. Thereafter, she was referred to Kenyatta National Hospital (KNH).
“That day, by the time we arrived at KNH, it was late and the queue at the hospital was unbearable. But she was in so much pain and so the next morning we took her to PCEA Kikuyu Mission Hospital,” explains Mr Ndaka.
Here, she was treated for a few weeks and then referred to Lions Eye Hospital, then to MP Shah Hospital and back to KNH where she is currently undergoing treatment.
At KNH, Mueni has undergone numerous tests, among them radiological.
In December 2022, she was diagnosed with hematohidrosis (a condition in which capillary blood vessels that feed the sweat glands rupture, causing them to exude blood, and which occurs under conditions of extreme physical or emotional stress).
Previously, a radiological report dated April 6, 2021, from KNH where a CT paranasal sinuses examination was done, indicated a right orbital–nasal injury and the impression was rhinitis.
Also, it showed that there was a small right frontal linear skull fracture, as well as moderate adenotonsillar hypertrophy.
Another report from KNH dated June 17, 2021, stated essentially normal six vessels cerebral angiogram and the source of the bleeding at the right carotid region was not demonstrated during this study.
Medics, including from KNH, contacted by Nation on this story declined to comment.
Our efforts to get an official statement regarding just what is ailing Mueni hasn’t been successful. On April 28, with permission from the Ndaka family, we sent an email to the KNH administration and the corporate affairs department, requesting that the hospital authorises the doctor currently handling Mueni’s case to give an expert opinion.
On May 2, after a follow-up call regarding the previous email, we received a response stating that our email had been received and that the request had been forwarded to the management for further guidance. So far, that is the only available response.
Nation was unable to reach KNH chief executive officer Evanson Kamuri.
In the meantime, as they await this, Mueni’s family continues to suffer, hoping that this time round the doctors will once and for all figure out just what is wrong with their daughter.
All they want is for her to get well so that they can resume their normal lives as it was before that fateful Friday afternoon, two years ago. BY DAILY NATION