Marie – Haiti

The name of the child in this story has been changed to protect confidentiality.

Marie’s mother, Yolande, is HIV-positive and Yvenson (her fifth child) was being followed as part of a mother-to-child transmission prevention program. Yvenson, only 14 months old, was very ill with severe acute malnutrition, anemia, and persistent fever. Marie went with her mother to bring Yvenson to the doctor where he would be worked up for probable TB. At Yvenson’s doctors visit the physi- cian noticed that Marie, a very thin but active and joyful nine-year-old girl at the time, had a terrible cough. A chest X-ray and sputum smears confirmed that Marie had pulmonary TB, and was the index case in the home. Marie’s five-year-old brother, Jamesley, who is HIV-positive, was later also diagnosed with pulmonary TB.

Marie was found to be HIV-negative and initiated standard first-line TB therapy in November 2009, but Marie struggled to adhere to her treatment; she missed her appointments and did not take her medication regularly. As the only girl in a family of five children, Marie was left in charge of her two younger siblings while her mother went to work at the markets each day.

Despite multiple calls and reminders to come to appointments, all three children were failing their treatment by the end of the first month; shortly thereafter, Haiti was devastated by the earthquake of January 2010.

Shortly after the earthquake, Yvenson began suffering from severe seizures. His doctors discovered that Yvenson’s untreated TB in his lungs had spread to his brain (TB meningitis). He was hospitalized for three weeks at a field hospital. It is remarkable that Yvenson survived after being intubated and on life support in the field hospital for an entire week. Even though Yvenson survived, he was left blind. Marie’s other brother, Jamesley, was removed from their mother’s care and sent to live with an aunt who was able to ensure that he took his HIV and TB medications regularly.

Sadly, no one in the family was able to oversee Marie’s care, and her partially treated TB slowly acquired resistance. By March 2010, Marie had developed resistance to isoniazid. Streptomycin was added to her TB regimen, and she was hospitalized for part of the treatment to ensure directly observed therapy (DOT), but she again stopped regularly taking her TB medications after she was discharged from the hospital.

At the end of March 2011, a neighbor found Marie vomiting blood at home and brought her back to the hospital. Her sputum tests were again positive for TB, and the GeneXpert test confirmed that in addition to her existing resistance to isoniazid, Marie had developed resistance to the rifampicin; Marie now had MDR-TB. Her chest X-ray showed multiple large cavities in both lungs with destruction of the entire left lung. She was hospitalized at an MDR-TB field hospital in critical condition, coughing up large amounts of blood, and requiring multiple blood transfusions. MDR-TB treatment was initiated in April 2011, and Marie improved quickly thereafter.

Marie’s mother abandoned her at the hospital, visiting her only four times during her 14-month stay. Marie was preadolescent and became depressed. She started to refuse her MDR-TB treatment, hiding from the nurses or spitting the drugs out. Six months after initiation of MDR-TB treatment, Marie’s sputum smears and cultures were again positive. Support strategies were reinforced and initially helped, and her sputum cultures were again negative.

The injectable drug, kanamycin, was stopped 14 months after initiation of MDR-TB treatment, since Marie had had five consecutive negative TB cultures. In May 2012, following the discontinuation of treatment with kanamycin, Marie was discharged from the field hospital and went to live with her uncle, as her doctors were concerned about Marie’s mother’s willingness to supervise her care.

The same month Marie was discharged from the hospital, her sputum smears and cultures were again positive despite twice-daily DOT by a nurse. After 18 months of MDR-TB treatment, Marie’s sputum cultures remained persistently positive. Repeated drug susceptibility tests confirmed that she had not acquired drug resistance to any other TB medications. Scans of her lung demonstrated severe scarring and fibrosis throughout her left lung, which was functionally dead. Multiple MDRTB specialists evaluated her case and came to the decision that it would not be possible to cure her without removing the left lung, because the drugs could not penetrate the dead and infected left lung tissue. The only way to save Marie would be to remove her left lung so that her right lung could be effectively treated. This was an extremely difficult decision, because there is no thoracic surgeon or pulmonary specialist in all of Haiti. A pediatric surgeon from California who regularly works in Haiti evaluated Marie’s case and agreed to operate.

The surgery went well, and currently Marie is in stable condition, but she remains culture-positive one month after her lung surgery. Over the course of Marie’s treatments, the left lung, now removed, had continually reinfected the right lung. Ideally Marie would be treated again with several months of an injectable drug such as kanamycin, in addition to her oral MDR-TB medications; however, Marie has already received 14 months of kanamycin, which severely damaged her hearing. A recent audiogram showed that Marie has severe bilateral hearing loss. If Marie is retreated with kanamycin, it is likely that she will become deaf. To avoid retreatment with kanamycin, Marie’s doctors are in the process of completing an application for the compassionate use of bedaquiline (a new MDR-TB drug that just received FDA approval for the treatment of MDR-TB in the United States) to optimize her treatment regimen without worsening her hearing.

In spite of all of her difficulties, Marie is back in school and optimistic about her future. She has bonded with her doctors and nurses, and is taking all of her medications as prescribed. She looks forward to being cured of her MDRTB, graduating from high school, and starting a new life.

Story Collected by: Vanessa Rouzier, Haitian Group for the Study of Kaposi’s Sarcoma and Opportunistic Infections (GHESKIO), Port-au-Prince, Haiti; Serena Patricia Koenig, MD, Partners In Health, Brigham and Women’s Hospital, Boston, United States of America