Dayana began her battle with drug-resistant tuberculosis (DR-TB) when she was just two years old. Her mother had finished a six-month first-line treatment course for TB, but was still testing positive for TB. Dayana’s mother started on DR-TB treatment. Both she and her doctors were very concerned about the health of her children. Although Dayana had no complaints, she came to the hospital to be evaluated. A CT scan revealed that Dayana, too, needed treatment for DR-TB.
The related analyses and the tests were very expensive for Dayana’s family, leaving them sometimes with less than $2 per day for food. Dayana’s father, a sailor who is rarely home, offered little financial or emotional support. Dayana and her mother also faced terrible discrimination as a result of their DR-TB, even from their own family. Dayana’s grandparents, with whom they lived, closed them off from their part of the house, and sometimes shouted at them. Dayana cried often.
Due to financial obstacles, Dayana had to wait a full six months after her initial diagnosis to begin her treatment for MDR-TB. While beginning treatment was a positive step, it was also a very difficult one. The MDR-TB drugs gave Dayana chills, made her extremely sleepy, and frightened her by changing the color of her urine. She hated the taste, which Dayana’s mother tried to mask by combining the pills with yogurt, strawberry juice or papaya.
But the worst part of all for Dayana was the painful injections. She resisted being touched in the area where they were administered, and cried every time she went to the health center or saw the nurses bringing needles. Her injection area would grow hot to the touch, and she had difficulties walking properly after the injections. Dayana would plead with her mother, “Mama, I do not want to, I’ll be good.”
Dayana’s health has improved after six months on DR-TB treatment. Her grandparents have now let them back into the rest of the home, and Dayana will enter nursery school soon. Dayana is very happy, saying she will “now have friends.” But her occasional display of anxious and violent behavior, and her increased sensitivity, persist.
Struggling financially and with the toll of both her and her daughter’s DR-TB, Dayana’s mother has also been emotionally and psychologically changed. She has been diagnosed with depression, but has no money to pay for her prescriptions. And yet, she tries to be strong for Dayana and her other children. With no money for transportation to the health center, Dayana’s mother walks hand-in-hand with her children for two hours each day, with only their jokes and an “I love you” to keep them moving onwards.
Story Collected by: Haydee Callata, Carmen Contreras and Leonid Lecca (Partners In Health)