Photo: A hydrocephalus patient at the CURE Children’s Hospital of Uganda, Photo Credit: https://cure.org/2021/01/conditions-we-treat-hydrocephalus/
For patients in big cities like Chicago, Illinois, populated by world-class medical institutions, finding treatment for serious conditions is only a matter of affording it, not locating it. However, in rural areas across the United States and around the globe, not only is healthcare difficult to afford but also to find. In places like rural Uganda, families have difficulty accessing healthcare, which can be over hundreds of miles away. In February, members of the Medical Journalism Club met with Richard Siegler, a Laboratory Schools alum, and the President and Director of Bulamu Healthcare, a nonprofit organization that provides pro bono healthcare services to these families, from primary care to C-sections to complex neurosurgical procedures. According to Bulamu Healthcare, “Uganda is a mountainous country. The 30 million Ugandans living in rural areas, who are mainly subsistence farmers, have very poor access to healthcare” (“The State of Healthcare in Uganda, n.d.). This geography poses a challenge for treatment options, as some require immediate emergency intervention.
Hydrocephalus is caused when cerebrospinal fluid (CSF), which carries nutrients to the brain and protects it from damage, is either overproduced or poorly drained, which increases the pressure on the ventricles or hollow parts of the brain, potentially stunting neurocognitive development. A common treatment for hydrocephalus is a Chhabra shunt, which is a tube that acts as a drainage system for CSF into the peritoneum. However, shunts are a relatively new medical device, and they often need fixing called a shunt revision when they get blocked or clogged. Shunts can need tens of revisions before they function properly, and for patients who live far away from neurosurgical treatment centers, it is neither suitable nor accessible. Incredibly, Dr. Benjamin C. Warf, the director of Neonatal and Congenital Anomaly Neurosurgery at Boston Children’s Hospital, and Professor of Neurosurgery at Harvard Medical School, developed a procedure to cure hydrocephalus that does not require a shunt. This surgery is called an endoscopic third ventriculostomy with choroid plexus cauterization (ETV-CPC), in which the surgeon creates a passage within the brain for CSF to drain and cauterizes (burns) the choroid plexus which is the tissue that secretes CSF. This greatly reduces the need for surgical revision, as there is no device involved.
The CURE Children’s Hospital of Uganda (CCHU) is a pediatric neurosurgical center in Uganda that treats infants and young children with complex neurological disorders, like hydrocephalus and spina bifida. CCHU is the center at which Dr. Warf’s ETV-CPC procedure was studied, and to which Bulamu Healthcare refers its more serious cases. The study concluded that while ETV-CPC is less likely to fail or need revision, it is also less likely to reduce ventricle size that improves neurocognitive function. However, using the Bayley Scales of Infant and Toddler Development, the authors of the study concluded that “in Ugandan infants with postinfectious hydrocephalus, this single-center, randomized trial did not show a significant difference in cognitive outcomes at 12 months between infants who underwent ETV-CPC and those who underwent ventriculoperitoneal-shunt placement” (Kulkarni et al., 2017).
While ETV-CPC cannot be done for patients who have extremely severe cases of hydrocephalus, like those who have a CSF infection, or distorted brain anatomy, the use of these more accessible treatments for rural neurosurgical patients is greatly increasing survival rates with infants who have hydrocephalus, which isn’t that uncommon in Uganda. Because geographic challenges make shunting implausible for many rural patients, CCHU has set an example for other countries like Nigeria and Zambia, which face similar geographic challenges, and have also begun training their neurosurgeons to operate on qualifying patients with ETV-CPC. While Kulkarni et al. only observed one treatment in one medical center, moving forward, medical breakthroughs like surgical alternatives to shunting can reduce disparity in survival rates between rural and urban patients, not just in Uganda, but all around the globe. These studies emphasize the message that medicine is not one-size-fits-all, and healthcare teams must consider the circumstances and context of each patients’ life to determine the best treatment plan for them.
Bibliography
Kulkarni, A. V., Schiff, S. J., Mbabazi-Kabachelor, E., Mugamba, J., Ssenyonga, P., Donnelly, R., Levenbach, J., Monga, V., Peterson, M., MacDonald, M., Cherukuri, V., & Warf, B. C. (2017, December 21). Endoscopic treatment versus shunting for infant hydrocephalus in Uganda. The New England Journal of Medicine. https://www-nejm-org.proxy.uchicago.edu/doi/full/10.1056/NEJMoa1707568
The state of healthcare in Uganda. (n.d.). Bulamu Healthcare. https://bulamuhealthcare.org/healthcare-in-uganda/