Jane – Sweden

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

Jane, suffering from a mild intellectual disability, was born in India and was diagnosed with TB at age three, but treated only with rifampicin and isoniazid. In 2002, while receiving treatment, Jane was adopted by a family in Sweden. She finished her treatment in Sweden, and her parents and doctor assumed her to be cured.

As Jane approached puberty, her TB infection reactivated, but this time with a vengeance. Jane, now 12 years old, was seriously ill. Her parents took her to see several physicians in Sweden, who all misdiagnosed her symptoms as pneumonia and offered her ineffective treatments for her actual disease. While Jane waited to be correctly diagnosed, her condition became more and more severe.

In July 2011, Jane went to the hospital, where physicians performed cultures and DST. They also obtained sputum as well as other samples using bronchoalveolar lavage (an uncomfortable procedure where a tube is passed through the mouth or nose into the lungs to collect a sample) and gastric lavage. In August 2011, Jane was diagnosed with MDR-TB; her strain of TB was resistant to isoniazid, rifampicin, ethambutol, ofloxacin, moxifloxacin, and rifabutin.

Jane began treatment for MDR-TB and was confined to an isolated room in the hospital for three months. Once her sputum became negative for TB, she was discharged from the hospital. Nurses then visited Jane at home three days a week for the next coming six months of treatment to administer her injections and perform blood tests.

While receiving treatment, Jane suffered from bone marrow depression, which resulted in five blood transfusions. Jane also suffered from severe vomiting in the first six months of treatment; diarrhea; and fatigue.

Jane and her family did not suffer financially because of TB (treatment is free in Sweden), but they did find themselves socially isolated both as result of the circumstance of the disease and the fact that they spent a majority of their time in the hospital and then at home with Jane.

The fact that TB and MDR-TB are rare in Sweden could result in delayed diagnosis and treatment. Luckily, no one else in Jane’s environment was infected, and Jane responded well to treatment, which she completed in February 2013, and is today considered in good health again.

Story Collected by: Rutger Bennet, MD, Astrid Lindgren Children’s Hospital at Karolinska University Hospital, Sweden