A young girl’s struggle with tuberculosis

Njeri* is supported by the oxygen machine in the house. PHOTO: LILIAN KAIVILU.

A young girl’s struggle with tuberculosis

By Lilian Kaivilu

“What started like normal fever turned into excessive heat and frequent chest pains. Then the worst happened: At only 11 years, my daughter was diagnosed with Multi drug resistance tuberculosis. Her condition has completely changed our lives…narrates Mama Njeri* a Nairobi resident.

In an iron sheet walled living room, a visibly tired Njeri* sits on the couch leaning towards a small wooden table dressed in a white table cloth. One would easily mistake the 12-year od’s posture for that of a person in deep meditation. But far from it. Njeri* is in discomfort as I later learn from her mother Janet*, popularly known as Mama Njeri in the neighbourhood.

The young Njeri struggles to adjust the pipe that is connected to her nostrils from an oxygen tank inside their house. She is careful not to unplug the tube. The tank is placed on one side of the table while on the other is Njeri’s plate of lunch. We walk into the house just after the young girl had taken her position to enjoy some sunlight coming into the house though a small window. She can hardly move. As a result, the mother has to carry her, albeit carefully in order to pave way for us to enter the room for the interview.

Njeri's* mother in their home in Pipeline, Nairobi. PHOTO: LILIAN KAIVILU
Njeri’s* mother in their home in Pipeline, Nairobi. PHOTO: LILIAN KAIVILU

This has been the life of the Standard Six pupil at Junior Willy Academy in Nairobi since she was diagnosed with multi-drug resistance tuberculosis in January 2017. Njeri would then join the 460,000 people in the world living with the disease. According to the Global Tuberculosis Report 2016 by the World Health Health Organization, there were 1,400 cases of Multi Drug Resistance tuberculosis (MDR-TB) in Kenya in 2015.

Multidrug-resistant tuberculosis (MDR-TB) is a form of TB caused by bacteria that do not respond to isoniazid and rifampicin, the two most powerful, first-line anti-TB drugs. However, according to WHO, MDR-TB is treatable and curable by using second-line drugs. This, though, requires extensive chemotherapy with medicines that are expensive and toxic.

By February 2018, the family had an outstanding bill of Sh1.1million.
By February 2018, the family had an outstanding bill of Sh1.1million.

After numerous visits to different hospitals, Mama Njeri says the family had to admit the girl at Kenyatta National Hospital in August 2017 for specialized treatment. Here, the 12-year-old would be put in an isolation ward where only her father and mother were allowed to visit.

By February 2018, the family had an outstanding bill of Sh1.1million.
By February 2018, the family had an outstanding bill of Sh1.1million.

And for five months between August 2017 and February 2018, Mama Njeri and her husband not only exhausted their finances but also had to readjust their daily schedules in order to make time for the ailing Njeri. “I had to quit my job as a grocer. I could not make it any longer because the hospital visits were so demanding,” she says.

Every day, the mother of three would commute from Pipeline area in Nairobi’s Eastlands to Kenyatta National Hospital where her daughter was admitted. “I would spend at least Sh400 every day on transport and fruits for my daughter.” The World Health Organization records that in 2016 alone, about one million children became ill with TB and 250 000 children died of the disease.

Njeri was discharged on February 15, 2018.
Njeri was discharged on February 15, 2018.

Although tuberculosis drugs are free in the country, Njeri’s family has had to incur other expenses such as transport and now the maintenance of the oxygen machine in their house. In order to ease financial burden on TB patients, the Global Fund gave Sh4.6 billion to Amref Health Africa in December 2017 to help fight tuberculosis and malaria between January 2018 and June 2021. The World Health Organization estimates that the world requires $2.3 billion per year to fill resource gap for implementing existing TB interventions.

The financial burden was already weighing down on Njeri’s family in less than a year. In five months, her hospital bill accumulated to Sh1.1 million. But according to her mother, their daughter was discharged after the family pleaded with the hospital to allow the young girl to recuperate at home and later resume school.

“However, we had to do a fundraiser to assist us to buy the oxygen tank that cost us Sh110,000. “ Although relieved by the miraculous discharge of their daughter from the hospital, Mama Njeri and her husband had to contend with a new challenge of maintaining the oxygen machine.

Njeri* is supported by the oxygen machine in the house. PHOTO: LILIAN KAIVILU.
Njeri* is supported by the oxygen machine in the house. PHOTO: LILIAN KAIVILU.

With unreliable electricity supply in the informal settlement, fears of the machine malfunctioning were rife. “We had to buy a generator to operate the machine when there is no electricity supply in the house. It cost us Sh6,500,” she says. The family says they have been relying on well-wishers to clear the hospital bill. Mama Njeri spends about Sh1,000 to fuel the generator when there is no electricity supply in the house.

 

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