The Black Vault - Beyond Folklore

A mother from the rural Haitian Artibonite Valley tells us how she lost her newborn baby. She was awakened one night by a sound. She opened her eyes and with horror she watched a beast enter the house and hover above her sleeping baby girl. The mother tried to scream but could not; she tried to move but could not. She lay paralyzed in terror watching a monster take hold of her baby. In the morning, the mother woke to find her child listless and febrile. She brought her baby to the local hospital where the child died soon after admission. Fearful that the beast would return to feed on the corpse, the mother buried the child in a garden directly outside the window of her bedroom. On awakening every morning, the mother opens her window and checks on her baby's grave.

The loup garouwerewolfis a mythical beast of Haitian folklore that "survives" by preying on unbaptized babies, either right before or right after their birth. The beast takes many forms and can thereby sneak into a home at night and suck the blood from a pregnant woman's belly or from a sleeping child's body. In rural Haiti, when going to bed at night, expectant parents or parents of a newborn child surely check their door locks twice, firmly bolt the windows shut, and plug with rags any holes that may have developed in the earthen walls of their home. Having taken all available precautions, these Haitian parents fall to sleep but with fear in their hearts that they may awaken to find their child dead, the victim of loup garou.

Given the high rates of perinatal and newborn mortality in Haiti, and the inadequate means available to the Haitian poor to combat the causes of these deaths, it is no wonder that folklore has emerged to explain the loss of a new child. More than 90% of rural Haitian women give birth in their homes with resultant high rates of birth asphyxia and traumatic birth injuries. Neonatal sepsis and respiratory syndromes go unrecognized until the child is in extremis. Congenital syphilis and tetanus remain important causes of perinatal and newborn death. Exact estimates of perinatal and newborn death rates in rural Haiti are difficult to obtain because so many children die before ever coming in contact with a health care provider; however, best estimates suggest rates approaching 10%. For the Haitian poor, the folklore of the loup garou can help to explain the unexplainable, to deal with the fear, the guilt, and the helplessness generated by the loss of a child.

Medical anthropologist Paul Farmer1 is critical of the exploitation of Haitian folklore as "medical exoticisms." He believes that foreign medical personnel visiting Haiti are too often titillated by zombies and the occult, but forget that disease in Haiti is caused by poverty, not voodoo. In discussing werewolves, we do not want to belittle the Haitian poor; rather we hope to emphasize that in Haiti, as elsewhere, the death of a child is a profound psychological trauma for the parents and the community at large.

Why in the 21st century do so many newborns in Haiti continue to die of preventable diseases? The history of syphilis, a leading cause of perinatal and newborn death in Haiti and other developing countries, provides insight.2 Syphilis was first recognized in 1531 by Fracastorius, who called it the "serpentine disease of the Island of Hispanolis," believing that Christopher Columbus' crew contracted the disease during their voyages to the Americas and brought it back to Spain.3 (Haiti is located on the western third of the Caribbean island of Hispanola.) Syphilis ravaged Europe, and congenital syphilis was soon recognized as an important complication, but the world waited another 400 years for a cure. In an amazing string of scientific breakthroughs, the etiologic agent of syphilis was identified in 1905, a diagnostic test was developed in 1906, and a treatment was developed in 1910. Paul Ehrlich's discovery of Salvarsan marked the beginning of the modern era of chemotherapeutics, eventually leading to the discovery of penicillin, the definitive treatment for syphilis, in 1928. Confident public health experts soon talked of "wiping out" congenital syphilis by testing pregnant women with the new serologic tests and treating infected women with the new medical magic bullets.4

What went wrong? Why more than 50 years later is congenital syphilis still a leading cause of perinatal and newborn death? Victora and colleagues5 recently proposed the "inverse equity hypothesis" to explain historical trends in child-health inequities. They postulated that as new health care interventions are introduced, higher socioeconomic groups benefit from the intervention before the poor, and consequently health inequities initially increase. However, over time, the benefits from new medical interventions trickle down to the poor, and inequities decrease. The high rates of congenital syphilis in countries like Haiti provide evidence that many people have yet to enjoy the trickle-down effect of a health technology introduced more than 50 years ago.

The barriers that prevent the flow of health technologies to the poor are many and complex6; however, we believe that the medical research community that develops new health technologies must assume some responsibility. We propose a correlate of the inverse equity hypothesis, that medical research on novel health technologies is a higher priority than research on the equitable distribution of existing technologies because higher socioeconomic groups "control" research agendas and are much more interested in acquiring new health technologies for themselves than sharing existing technologies with the poor. As patients in the United States and Europe enjoy fourth-generation cephalosporins, and as researchers are striving to develop the next generation, pregnant women in Haiti await access to penicillin.

Slowly, very slowly, operational research is bringing syphilis diagnostics and treatments to the poor of the developing world. Studies have demonstrated the failure of centralized prenatal syphilis screening strategies, where women's blood is drawn at a community clinic and transported to a central laboratory, and where seroreactive women are treated at a follow-up visit.7 Poor infrastructure and poor communication systems in developing countries doom such centralized testing strategies to failure. Other studies have shown that decentralization of syphilis testing to the local clinic level with same-day on-site treatment dramatically improves outcome.8-10 The World Health Organization has been spearheading efforts to simplify syphilis diagnostic tests so that they will be more suitable to field conditions. More than 50 years after public health experts talked of wiping out congenital syphilis, diagnostic tests, treatments, and strategies to prevent congenital syphilis are slowly being retooled to improve access for the poor of countries like Haiti.

Knowing this history of syphilis, what do we say to a devastated mother who brings her dying, syphilitic baby to our hospital in Haiti? Do we try to dissuade her of her belief in the loup garou? Do we tell her a more horrible story, the truth: a simple prevention existed for her baby, has existed for 50 years, but the world decided not to share it with her? As we try to explain the unexplainable, will we call upon our own medical folklore? Will we stoop to the vicious lore that poor people are incapable of receiving care and blame the mother's poor health-seeking behaviors or medical "noncompliance" for the death of the child?

No. Let's move beyond folklore. Let's sit and weep together at the loss of a child. Let us then recommit to wiping out congenital syphilis. Let's use research to actively increase the flow of health technology to the poor. Let's commit the necessary resources to wiping out preventable newborn death in the developing world, and let's hope that in another 50 years poor Haitian parents do not have to explain the death of their child by the loup garou.

http://jama.ama-assn.org/issues/current/ffull/jpo20033-1.html