A Small Girl with a Big Challenge

Dr. Odunayo Johnson Alakaye stood in the hallway of Botsabelo MDR-TB Hospital in Maseru, Lesotho, cradling a toddler in his arms. Mamahele,* the 14-month-old girl, fussed for her mother, who stood beside Dr. Johnson wearing a blue respirator that concealed her nose and mouth. After a few tired pouts, the child let out a raspy cough.

Mamahele and her mother arrived at the Partners In Health-supported hospital six weeks prior. Before arriving, clinicians at a health center near her village unsuccessfully treated her for pneumonia three separate times. “She showed no response to the pneumonia treatments. She was still coughing. She was still losing weight. She wasn’t developing properly—she couldn’t stand on her own, she wasn’t walking,” Dr. Johnson says.

Such delays in proper diagnosis and treatment can be deadly. An X-ray of the child’s chest revealed to the team at Botsabelo a damaged section of lung. To confirm TB was the culprit, they needed a sample of sputum—mucus from the lungs that is examined to diagnose TB and identify drug resistance.  

Pediatric TB cases present unique challenges at every step. Producing sputum can be difficult for adults, let alone a child Mamahele’s age. This leaves two options: Staff can perform gastric aspiration, a process that involves routing a tube through the infant’s nose and into the stomach in order to extract stomach fluid; or they can induce a sputum sample using a catheter fitted to a syringe. In the case of Mamahele, the team opted to induce a sputum sample. Within a day of obtaining the sputum sample, they were able to determine that Mamahele had a strain of TB resistant to rifampicin and isoniazid, two first-line TB drugs that have been in use since the 1950s.  

While Dr. Johnson and his team began putting together a treatment strategy, health workers visited Mamahele’s home to screen family members and anyone else who had been in close contact with the child. This process, known as “contact tracing,” is used to approximate how a patient was infected and ensure that nobody else is sick. After the initial contact screenings, the team found that no immediate family members had TB. How then had the child become infected?

An estimated 30,000 children become sick every year with MDR-TB.

The global burden of TB is staggering. Annually, more than 8 million people become sick with TB and approximately 1.5 million people die from it. Pediatric TB has been neglected for decades; until a few months ago there weren’t even reliable estimates on how many children were sick. Earlier this year, Dr. Mercedes Becerra, senior TB specialist at PIH, published a study that estimated 1 million children become sick with TB every year—double the number previously thought—and 30,000 children become sick every year with multidrug-resistant TB (MDR-TB).

It was a pediatric patient that led Dr. Johnson to focus his efforts on TB and HIV. One day during his medical residency in Nigeria, Dr. Johnson was talking with a 13-year-old TB patient. The boy began violently coughing up large amounts of blood and died within a matter of minutes. It stunned the young doctor.  “I knew then that I wanted to specialize in TB,” Dr. Johnson says.

Over the years, he has worked with many pediatric patients, including Mamahele. One of the persistent challenges is that there are no pediatric formulations of MDR-TB drugs, which means that clinicians must work closely with pharmacists to monitor the patient’s weight and adjust the dosages. “We work together to calculate their dosages and then break up the adult medications, or cut them or grind them, to be precisely the dosage the child needs,” Dr. Johnson says. “It’s not easy.”

Nothing about MDR-TB is easy. It takes two years to treat. An average adult patient will consume more than 14,000 pills and endure eight months of daily injections. Current treatment regimens are highly toxic and can lead to hearing loss, psychiatric illnesses, and liver damage, among many other side effects. Because children Mamahele’s age can’t communicate how treatment is affecting them or whether particular issues are surfacing, it’s imperative they’re closely monitored and followed up with regularly.

She is doing very well and responding to the medications.

After six weeks the team at Botsabelo began making plans for Mamahele and her mother to return home. “She is doing very well and responding to the medications,” Dr. Johnson says. “She gained more than 3 kilograms and the cough is no more.”

Mamahele and her mother live in a village near the town of Mokhotlong, which is seven hours from the Botsabelo MDR-TB Hospital. To ensure the child has steady access to quality care, PIH/Lesotho has made arrangements to rent a house for the family that’s only a few minutes walk to Mokhotlong Hospital. When the family moves, a village health worker from the community will visit the child at her home daily to administer the medications and monitor for side effects, providing a critical link between the patient and the health care system.

Still, it’s unclear what the future holds for the young girl. The global cure rate for MDR-TB is only 48 percent, and 80 percent of patients who fail treatment die within three years. This is why PIH insists on accompanying patients, delivering food and providing social and moral support in addition to clinical care.

Mamahele and her family have a long and daunting road ahead. Dr. Johnson and everyone at PIH/Lesotho will be with them each step of the way.

*The patient’s name has been changed.