Unique and Complex: The Art and Science of Epilepsy Treatment
In a brightly lit room at the Hospital de Niños (HDN) in Santa Cruz, Bolivia, a team of U.S. and Bolivian neurologists speak with a Bolivian couple whose two-year-old son has a rare neurological disorder called Sturge-Weber syndrome. The most common characteristic of Sturge-Weber is a port-wine birthmark on the face, but it can also cause seizures and eye problems. In this case, the toddler’s seizures have proven resistant to medical treatment. While the boy sleeps soundly on his mother’s lap, Dr. Rebecca Garcia of Lurie Children’s Hospital of Chicago talks with the parents about a possible surgical treatment option. The surgical intervention for Sturge-Weber syndrome is a radical procedure in which all or part of the diseased half of the brain is removed and disconnected from the healthy half. They have many questions about how this surgery might affect his development and what will happen to him without the surgery. Dr. Garcia and Bolivian neurologists Dr. Giovanna Flores and Dr. Shirley Martinez encourage the parents to take their time in the coming months to consider this major surgical option for their son. And, in the meantime, the HDN doctors will continue to work with the family to try other medical treatment options.
This is the last day of a week-long Neurology and Neurosurgery Institute (NNI) trip focused on diagnosis and treatment of pediatric epilepsy. Each day has been an opportunity for the physicians to exercise and improve their diagnostic skills, and each day brings a new reminder of the complexity of neurological disorders. There are a multitude of epilepsy syndromes and phenotypes, and they manifest differently from one patient to the next. This work is both an art and a science, and working in collaboration among a team of specialists improves chances for accurate diagnoses and successful treatments.
Lindsay Doucette (l) and Dr. Rebecca Garcia (r) with Dilan* and his mother in their Santa Cruz home.
The HDN team has developed comprehensive plans for the continued development and wider dissemination of pediatric epilepsy education and clinical practice in Bolivia. The array of diagnostic and treatment options is limited in Bolivia compared to the U.S., but the combined NNI and HDN teams are exploring strategies to increase access to tools including epilepsy medicines and genetic testing, through expanded international partnerships. We are hopeful that by maintaining this collaboration between the NNI and the HDN, there will be continued expansion of clinical and surgical care for Bolivians living with epilepsy.
The NNI team is honored to collaborate with the HDN providers and to learn about the realities of Bolivian pediatric neurology patients and the families who care for them. On the last day of our visit, Dr. Garcia and Solidarity Bridge staff had the opportunity to visit a patient at his home in Santa Cruz. Dr. Garcia had first met young Dilan* earlier in the mission week. When he entered the consultation room, Dr. Garcia greeted him with “Buenos días, Dilan!” Dilan replied, “I’ve been practicing my English to talk with you, but you speak Spanish!” Dilan was thrilled when we visited his home to hear more of his story. Every patient brings a world of uniqueness and complexity, and we are blessed to experience each of their stories through cross-cultural mission and, working in collaboration, to help clear paths to better futures.
*Patient names have been changed.