Beyond the ribbon cutting and celebration of opening a new state-of-the-art facility for the Global Tuberculosis Program at Texas Children’s Hospital and Baylor College of Medicine, the festivities offered the opportunity for our community to share stories that have touched our lives and hearts in the fight against TB.
During the dedication event, we learned about Samu. In November 2009, the 18-month old boy was referred to members of the Global TB team from a regional hospital doctor.
Samu’s story is heartbreaking, though unfortunately not uncommon. At the beginning of 2009 he was diagnosed with tuberculosis. Though he had spent several months admitted in different hospitals and receiving TB treatment, he was becoming sicker.
There was a high suspicion that he was infected with a drug-resistant form of TB. However, it could not be confirmed. It was hard to convince clinicians to start him on treatment for multidrug-resistant TB (MDR-TB), as there were not many facilities or specialists offering these services for children in the country.
But we were fortunate. By that time Doctors Without Borders was working at the government hospital and one of their doctors agreed to start Samu on MDR-TB treatment.
And it was magic. After two months he was discharged from the hospital, continuing his TB and HIV treatments at home, he was walking, playing, and growing well.
Despite his initial poor prognosis, he was declared cured of TB in January 2011. We stopped the TB treatment and just continued with his HIV care at one of our clinics.
Samu and his family taught us a lot about the challenges children affected with TB experience in Swaziland.
- Samu introduced us to the silent burden of pediatric TB in Swaziland. Despite the high numbers of TB we were seeing in adults, children were left behind, many times invisible. It was difficult to diagnose susceptible TB, and virtually impossible to diagnose resistant TB. Children with multidrug-resistant TB were systematically missed, as there were not adequate services for diagnosis and treatment. Baylor had to do more and better for these children.
- Baylor learned about the importance of family support to maximize the outcomes of children’s medical care. We always admired Samu’s mother, who halted almost one year of her life to try to keep her son alive. She spent months and months at Samu’s bedside and engaged other family members in his care. We then committed ourselves not to leave families alone by joining the fight for each of these children.
- We learned that despite the silence about TB in children, many people in Swaziland were willing to help Samu: Doctors Without Borders, the staff from the children’s ward, and more. They all assisted in everything we needed, and because of them Samu is alive today. We learned that together we can achieve more for the children in Swaziland.
And now, six years later, we can finally see our dream come true.
Today we have a clinic where we will provide the best TB comprehensive services for children free of cost, including diagnosis in the same day, preventive services and treatment, access to multidrug-resistant TB treatment for children and psychosocial support for the families.
This TB Centre of Excellence will assist the country to build national capacity, training health care workers from all regions. In addition, we will, develop national expertise to inform national and international recommendations.
This clinic will unite national efforts to improve the lives of the current and future Swazi generations. We know there is still a long way ahead, but today we recognize we are not alone.
For me, the biggest lesson Samu’s story teaches is that, despite all the unnecessary suffering, he fought every day to keep himself alive, and he did it. I want to dedicate this clinic to all the Baylor staff who throughout the years have devoted their efforts to give hope and care, and especially to the children and families who have been affected by TB. Each child and family have shown us the real value of life; each one of these individuals make our Baylor program in Swaziland excel.
From today, we are certain that the dream of zero TB deaths among the Swazi children is becoming a reality.
-Shared by Katherine Ngo, Program Manager for the Global Tuberculosis Program