Sentinel Project gives a voice to children battling drug-resistant tuberculosis

On World Tuberculosis Day, a new website shares the stories of children facing a deadly but curable disease.

Every year, thousands of children die from drug-resistant tuberculosis — a disease with a known cure. This happens because children do not have access to diagnosis or treatment for this disease. In spite of global advances made in tuberculosis treatment, children have been left behind.

March 24 is World Tuberculosis Day, a time to reflect on the tremendous advances to treating and preventing TB, as well as to focus on the work that still needs to be done. The Sentinel Project, a new global partnership of researchers, caregivers, and advocates, is working to shed light on the issue of children dying from drug-resistant tuberculosis (DR-TB). This week, they launched a new website, "Being Brave: Stories of Children with Drug-Resistant Tuberculosis," which gives a voice to the children from around the world who face the challenges of fighting DR-TB every day. Children like Juan, a four-year-old boy treated by PIH's sister organization Socios En Salud in Lima, Peru.

	Juan, an DR-TB patient in Lima, Peru.

Juan has captured the heart of every doctor and nurse in the tuberculosis unit where he has been living and receiving treatment for the last six months. Despite his separation from his family and his confinement to a wheelchair, Juan has maintained both his sweet demeanor and his playfulness. Although he says only a few words, he likes to hug and greet everyone with a smile. The resident physicians often wheel him out to their work area, where they let him play with their stethoscopes. Juan embodies the innocence of childhood: oblivious to the severity of his own illness and to his family’s tragedy, he continues to laugh and play. Nevertheless, there is little doubt that tuberculosis will leave both physical and emotional scars on this young boy.

Until six months ago, Juan lived with his family in El Agustino, the district with the highest incidence of tuberculosis in Lima. Approximately one year ago, Juan’s mother first became ill with pulmonary TB. Initially, she complied with her treatment, and her health improved. However, after a few months, Juan’s father left her for another woman, and she plunged into a deep depression and stopped taking her medicines.

A couple of months later, Juan developed a progressive cough. He was diagnosed with bacterial pneumonia and treated with a course of antibiotics, which failed to cure his cough. One day while playing, Juan fell and injured his back. He was brought to a referral hospital, where doctors diagnosed him with a fractured spine. Luckily, his spinal cord had not been damaged. However, the accident left him with a prominent hump in his back, and significant pain when walking.

Testing revealed that Juan actually had both pulmonary TB and Pott’s disease (TB of the spinal column) — which predisposed him to his injury. Furthermore, his TB was due to a drug-resistant strain, most likely transmitted from his mother. As a result, he was hospitalized not only for TB treatment but also to prevent further injury to his spine.

Juan’s mother never visited her son in the hospital. She was too sick, and eventually died of respiratory failure as a result of her TB. Juan’s grandmother, the family’s sole wage earner, visits Juan when she has time between working and caring for her disabled son. Juan’s treatment has so far been successful, but he still has a long road ahead of him. After another year of treatment, he will finally be ready for spinal surgery. Thanks to the excellent medical care he is receiving at the referral hospital, Juan will likely be able to walk again without pain and fully recover his lung function. Unfortunately, modern medicine cannot heal the emotional scars that he will undoubtedly have from the loss of his mother to DR-TB.

The Sentinel Project hopes that sharing the stories like Juan's story will inspire the international community to join children with DR-TB and their families and caregivers in the struggle for better diagnosis and treatment.

Learn more about the Sentinel Project and read more stories.

Learn more about PIH's work to fight tuberculosis.

The Sentinel Project on Pediatric Drug-Resistant Tuberculosis is a collaboration that includes the Department of Global Health and Social Medicine at Harvard Medical School, the National Institute for Research in Tuberculosis in India, the Treatment Action Group (TAG), and more than 130 individuals from more than 40 countries. This partnership collaborates to develop and deploy evidence-based strategies to prevent child deaths from this treatable disease.