BY MILLIE CHAPMAN.
Graphics by the Center for Disease Control.
Spina bifida is a neurological disorder caused by the incomplete closing of the neural tube during embryonic development. It can lead to paralysis, abnormalities of the cerebellum, and orthopedic problems, among others. There is a high rate of Spina bifida in Kenya, where I spent this past summer geolocating, and creating a database for, spina bifida cases. These cases were recorded by the pediatric neurosurgery team at Kijabe AIC Hospital, a referral hospital for all of East Africa. An increased understanding of spina bifida is important due to the permanence of neural tube defects and the extreme shortage of pediatric neurosurgeons in Kenya.
The goal for the project was to construct a data set to approximate relative incidence of spina bifida in the areas of Kenya served by Kijabe Hospital in order to explain the high rate of spina bifida in Kenya and potentially establish a link between this disease and malaria. Luke Myhre (DC ‘14) and I formulated a study to search for a geographical correlation between the two diseases. The link between spina bifida and Malaria is a logical hypothesis since both Plasmodium falciparum, the parasite responsible for malaria, and neural tube development depend on prenatal folate levels. The proven efficacy of folic acid supple- ments in reducing the incidence of spina bifida may contribute to the reduction of malaria if a clear link between these diseases can be established.
Upon arrival at Kijabe Hospital, we had the opportunity to meet with Neurosurgeon Leland Al- bright. Having practiced in Africa for 8 years as one of two neurosurgeons in East Africa, Dr. Albright had a significant number of cases from all over Kenya. He was able to introduce us to Billy Nganga, the database administrator for Bethany Kids (a funding program to pay for all pediatric neurosurgery cases at Kijabe). Billy, a previous spina bifida patient treated by Bethany Kids in 2004, helped us with the acquisition of the case data. We were eventually able to find over 1800 cases with listed hometowns to use in the incidence maps and seasonality graphs we created.
However, while on early morning rounds in Kijabe with the neurosurgery team, I realized that clinical data could not possibly tell the whole story. Even the best neurosurgical treatments cannot always cure spina bifida patients. Dr. Albright is incredibly skilled. He is the first author on a popular textbook used in medical education today and practiced for over thirty years in the U.S. before re- locating to Kenya. Even so, his patients would return to the hospital with multi-drug resistant UTI’s, infected shunts, and severe malnutrition. They received the requisite treatment, but surgery was not always sufficient to give these children a chance at a healthy life. And these were the lucky children. These were the children who made it to the hospital.
My summer in Kenya showed me that there is more to medicine than clinical practice, more to health than high life expectancy, more to spina bifida cases than surgery. There is a social component to health, which includes inequity, stigmatization, and medical access. There is a human component to medicine; a component of understanding health and illness that hard science, medical procedures and statistics do not address. I hope that the research we did this summer becomes a paper of incidence maps and seasonality graphs and translates into meaningful impact. It ad- dresses the larger social is- sue through policy changes that focus on the needs of individual patients from inadequate access to medical resources to decreased stigma of neurological disorders. I hope an analysis of the disease’s spread will help propose preventative measures for expectant mothers and reduce spina bifida and malaria incidence, because palliative care simply will not address every facet of this problem.