ORIGINAL ARTICLE
Pediatric Neurosurgery in the Developing World: The Haiti Experience Alexander G. Weil, MD, FRCSC, Aria Fallah, MD, MSc, Sanjiv Bhatia, MD, and John Ragheb, MD Abstract: Surgical disease has recently become recognized as an important determinant of global health. Pediatric neurosurgery has generally been neglected in international surgical initiatives. In Haiti, the poorest country in the Western hemisphere, neurosurgical needs are currently unmet. Project Medishare and Haiti Healthy Kids have treated more than 1400 children with hydrocephalus and congenital disorders for a 10-year period. To develop a sustainable model for improved neurosurgical health, a neurosurgical training program is currently being developed and implemented. Key Words: Developing, haiti, health care, hydrocephalus
are amenable to surgical correction, suggesting that the global burden of surgical disease is greater than that caused by human immunodeficiency virus, tuberculosis, and malaria combined.8,10,11 There is an unmet surgical need in low- and middle-income countries (LMICs): of the 200 million surgeries performed annually worldwide, 74% are performed in the richest third, whereas the poorest third undergo just 3.5%.3,12 In Haiti, surgical procedures have traditionally been concentrated in major cities and for patients who can afford them, leaving the vast majority of Haitian surgical diseases untreated.3,5 For example, until 2007, when the district health commissioner for central Haiti rendered all prenatal and emergency obstetric procedures (eg, cesarean sections) free, there was an almost zero rate of cesarean section and a 1.4% rate of maternal mortality per live birth in the large cities of Haiti.3
(J Craniofac Surg 2015;26: 1061–1065)
INTRODUCING HAITI
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espite being located just 700 miles away from Miami, Florida, more than 80% of Haitians live under the poverty line.1 Government and political instability, limited natural resources, vulnerability to natural disasters, limited access to education, as well as emigration of educated professionals to developed nations have all contributed to stunting Haiti’s economy, making it the poorest nation in the Western hemisphere.1– 3 Today, Haiti is afflicted with very poor infrastructure, with inaccessible roads to rural areas, unreliable electricity, limited access to water and sewage disposal, as well as limited medical facilities, especially outside major city centers, where most of the population resides.4,5 As a result, the Haitian Government struggles to provide the population of 10 million with basic health care, especially in rural areas.6,7 Consequently, infant mortality rate is strikingly high and life expectancy is the lowest in the Western hemisphere.1
SURGICAL MISSION TO HAITI: IS THERE A ROLE FOR SURGERY? Traditionally, the public health focus worldwide and in Haiti has been on communicable diseases.3,5,6,8 Experts have dubbed surgery as ‘‘the neglected stepchild of global health,’’3 despite surgical disease being a leading cause of disability worldwide.9 A conservative estimate cites that approximately 11% of worldwide diseases From the Division of Pediatric Neurosurgery, Department of Neurosurgery, University of Miami/Miller School of Medicine, Miami Children’s Hospital, Miami, FL. Received December 18, 2014. Accepted for publication December 29, 2014. Address correspondence and reprint requests to John Ragheb, MD, Department of Pediatric Neurosurgery, Miami Children’s Hospital, 3100 SW, 62nd Ave, Miami, FL 33155; E-mail: [email protected] The authors report no conflicts of interest. Copyright # 2015 by Mutaz B. Habal, MD ISSN: 1049-2275 DOI: 10.1097/SCS.0000000000001681
The Journal of Craniofacial Surgery
A ROLE FOR PEDIATRIC NEUROSURGERY IN HAITI Although the role and impact of neurosurgery in LMICs have been controversial in the past, neurosurgical missions to LMICs have become a growing part of global health for the last 20 years.13–15 Some authors have argued that there are more pressing health issues in countries like Haiti, such as access to food, clean water, and primary health care services (eg, vaccination), and that energy and funding should go toward these services rather than subspecialty surgery.16 However, Haitian children with neurosurgical conditions deserve access to the same services available elsewhere in the world, and in 2005, the World Health Organization has made emergency care and surgical services a priority in global health.7 There is a great need in Haiti for essential pediatric neurosurgical services that are tailored to local needs.3,14 Approximately half of the surgical burden in LMICs afflicts the pediatric population, who are afflicted most commonly with congenital disorders, trauma, and malignancy.10 A third of Haiti’s population is younger than 14 years, a number that nearly doubles that of North America. Furthermore, childhood traumatic injury is a worldwide crisis, with most of these occurring in LMIC. With limited prenatal care, a high birth rate, and limited access to preventive medicine (eg, folic acid supplementation) among Haitians, spinal dysraphism rates are high.17–19 Despite the heavy burden of pediatric neurosurgical disease, neurosurgical care is provided to the population of 10 million by only a handful (n ¼ 5) of practicing neurosurgeons who service Port-au-Prince, with limited neurosurgical training as well as no formal pediatric neurosurgical training and basic resources. As a result, Haiti only has 0.05 neurosurgeons per 100,000 Haitians, compared with more than 1 neurosurgeon per 100,000 in the United States. Care for the common pediatric neurologic disease has traditionally been inadequate or not available, particularly in rural areas. Furthermore, there has been no formal neurosurgical training program based in Haiti. Over the past 3 decades, many factors such as the population growth, accelerated migration toward major cities, and expanded use of motorization without a parallel increase in infrastructure have all contributed in exacerbating the need for neurosurgical care in Haiti.
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Specialized surgery, particularly neurosurgery, has traditionally been considered impractical in resource-limited countries.17,20–22 Authors have argued that allocation of resources to high-technology services is inappropriate in countries that lack basic primary health.20 The cost of 1 complex surgery could be used to vaccinate, for example, thousands of children.20,23 However, there is sound evidence from Dr Warf’s contributions in sub-Saharan Africa and our mission in Haiti that pediatric neurosurgery is cost-effective in the developing world.22 Using a human capital approach, in which disability-adjusted life-year is used to calculate the cost averted by treating a condition, the annual economic benefit of treating the estimated 583 annual cases of hydrocephalus in Haiti would be between 6.6 and 11.3 million US dollars.
HISTORY OF PROJECT MEDISHARE AND HAITI HEALTHY KIDS Project Medishare (PM), a nongovernmental organization founded in 1994 by University of Miami physicians,4,24 has provided advanced health care, community development, and education in rural Haiti since its inauguration. Since 1998, PM has also provided support for the training of family physicians in Cap-Haitien. This successful program has been established by the Haiti Project of the Department of Family Medicine, a close partner of PM, in collaboration with the Ministry of Health (MOH) of Haiti and the medical school of the State University of Haiti. There are 15 residents in the program and 35 graduates who are now offering primary care services throughout the country. Project Medishare also fostered the development of visiting surgical specialty programs in general surgery, plastic surgery, urology, and pediatric neurosurgery. In 2003, the joint pediatric neurosurgery team from the University of Miami and Miami Children’s Hospital developed an affiliated hydrocephalus treatment program (Fig. 2), which has been supported by Haiti Healthy Kids, Inc (HHK) since 2009. Since the initial trip to Cange, Haiti in 2003, HHK has provided medical equipment and basic neurosurgical care over the past decade with approximately 10 surgical trips per year and additional interspersed assessment and follow-up visits (Fig. 1). These ‘‘vertical’’ surgical mission trips are centered on hydrocephalus care because this is a common condition that can readily be treated in a limited resource setting.3,17,22 Between 2003 and 2008, more than 300 patients were examined, with 187 receiving hydrocephalus surgery (Fig. 2). The standard first-line treatment of hydrocephalus, ventriculoperitoneal shunt insertion, comes at a price of shunt dependence and a high rate of shunt malfunction, which reaches 50% at 2 years and nearly 85%
FIGURE 1. Inaugural surgical mission of the Hydrocephalus Program in Cange, Haiti, fall of 2003.
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FIGURE 2. A, The senior author (J.R.) performing a cranial ultrasound on a child with postinfectious hydrocephalus in Haiti. B, The team performing wound care of a patient operated on for myelomeningocele repair.
at 10 years.25 Given the limited and often inexistent access to neurosurgical care, especially in rural Haiti, shunt dependence and subsequent shunt malfunctions are a dangerous, likely fatal condition in this setting. As such, as other international programs have successfully done, we have treated hydrocephalus using endoscopic techniques as a first-line measure, including endoscopic third ventriculostomy, choroid plexus cauterization, and endoscopic fenestrations of multiloculated hydrocephalus.17,24 The addition of choroid plexus cauterization to the endoscopic surgery armamentarium, which further decreases cerebrospinal fluid production, has improved our success rate at treating hydrocephalus in Haiti (Fig. 3). Because of the success rate with this technique, it has now been adopted in North American centers including our own, exemplifying how humanitarian surgical missions can contribute to improving care at home.26–28 Since 2008, approximately 200 surgeries have been performed annually. The model uses North American volunteer specialists to act as mentors and trainers for Haitian medical providers at the Hospital Bernard Mevs in Port-auPrince. These periodic trips have allowed more than 1000 children to be treated during a 10-year period. The mean annual economic benefit of this program is approximately $2.95 million.22
CHALLENGES FACED THROUGH A DECADE OF WORK IN HAITI In our efforts to provide optimal pediatric neurosurgical care to the Haitian population, we have faced obstacles and challenges, of which some are unique to Haiti and most are shared by surgical missions to other LMICs.2 –5,7,14,15,21,29–32 Challenges encountered have ranged from issues related to funding, equipment and supplies, manpower, local infrastructure, a lack of education material, tenuous government support, political instability, dealing with local policy, cultural differences, as well as climate. Since 2009, the funding of the Haiti Hydrocephalus program has been supported by HHK, Inc. This has helped finance mission trips. However, the trips are still supported almost entirely by physician’s personal expense and the majority of supplies and equipment
FIGURE 3. Endoscopic third ventriculostomy with choroid plexus cauterization. #
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recycled from our home institutions. Working in Haiti has been a lesson about learning to work in an environment where you make do with less, where nothing is wasted and everything possible is resterilized and reused. Although the earthquake that devastated Haiti in 2010 brought global awareness and massive funds to Haiti, of which most went to health-related causes, 4 years later, only a minority has made it to local organizations and hospital infrastructure remains insufficient.2,20,33,34 In one of the most advanced hospitals of Port-au-Prince, modern neurosurgical equipment is nonexistent and nearly all equipment used by our group comes from recycled or donated supplies (endoscopes, shunts, medicines, bandages, etc) brought by our team. Although the quality and completeness of equipment are not like those of the United States, this has not stopped us from treating basic pediatric neurosurgical conditions, such as myelomeningocele and hydrocephalus. Providing neurosurgical care in this setting is a fine balance between providing the best possible care under suboptimal conditions while avoiding interventions in which the suboptimal infrastructure puts the patient at unacceptable risk. As such, taking on neurosurgical cases more complex than the local infrastructure permits would be unethical, as would performing surgeries beyond the scope of one’s subspecialization.15 To exemplify, this is the case of a blind, bedridden 7-year-old boy with a posterior fossa medulloblastoma who was transferred to Bernard Mevs Hospital during a recent mission trip and in whom intervening would not only have been unfeasible, it would have been futile, because insufficient surgical instruments to perform the surgery, no access to ICU for postoperative monitoring and ventilation, as well as no ready access for proper oncological follow-up and adjuvant treatment would make the risks of care unacceptable and accelerate the inevitable.21 Sensitivity to the cultural differences in Haiti has been an important aspect in providing adapted neurosurgical care.35–38 The way in which you are perceived as a neurosurgeon is not as inherently thought. For example, because medical services are usually paid services, Haitians often feel that services offered at clinics or through Medicaid are inferior because they are free. Haitian’s cultural perception of disease and modern medicine as well as the health care worker to patient relationship are vastly different in Haiti than in North America. Traditional community healers and their influence on society play a significant part in the health care orientation of the population.18,35,36 Illnesses are thought to have either natural or supernatural causes, which are believed to result from either an imbalance with nature or caused by God, respectively. Natural illnesses can also be caused by sympathetic magic, where illnesses are caused by voodoo dolls and magicoreligious beliefs (eg, a knife under the bed will cut labor pain).35,36 There are also differences among
Pediatric Neurosurgery in Haiti
Haitians: urban Haitians are often receptive to modern medical care than rural migrants who gravitate toward traditional medical care. For these reasons and because of the long distances at high costs that must be travelled by rural Haitians to seek medical attention, they typically present at late stages of disease course. Haitians also fear blood transfusions and surgery, especially abdominal surgery. In addition, there are cultural differences in the way Haitian’s experience symptoms. Pain, for example, is believed to affect whole body system, rendering the localization and origin of the pain source unimportant and making descriptions of pain vague.36–38 In Haiti, the right balance of intervention is not easy to obtain. Overzealous help from well-intended but misguided North American surgeons can ‘‘first do harm.’’ This was especially true after the 2010 earthquake when many surgeons volunteered to help, although they had little experience working in a resource-poor environment or with the extreme pathology. It is unacceptable, even in resourceinsufficient Haiti, to provide substandard care below what would be acceptable for a child in a developed nation because of the perception that some care is better than none.15 Furthermore, the influx of foreign physicians can cause local private clinics to lose business, displacing Haitian medical professionals, who have to compete for patients in a marketplace dominated by volunteers.39
OTHER STRATEGIES FOR NEUROSURGICAL CARE DELIVERY IN LMICS The short-term surgical mission model, such as the Hydrocephalus Program of HHK, has been applied to successfully treat many different pathologies throughout the developing world.3,29,30 They represent a compromise from the missionary surgeon model, in which a surgeon lives in the country over an extended period of time, providing direct continuous care while training locals. Success of these short-term surgical missions relies on 7 principles, which include having a clear purpose, collaboration with the local community, education, service adapted to the local’s needs, multidisciplinary teamwork, outcome evaluation, and striving for sustainable change.30,32 There are pitfalls to this type of program. Some authors have argued that it is impractical, costly, and offers no long-term sustainable solution.21,32 In addition, although this model has been shown to work well for certain selective pathologies, such as cleft lip and palate deformities and chronic hydrocephalus, it has limitations in pediatric neurosurgery where indications are often not elective.29 Given the relative poor reporting of outcome and limited follow-up after short-term missions worldwide, many authors have questioned the actual effectiveness and, more importantly, morbidity, which are generally not well documented or reported.16,23 For all these reasons,
TABLE 1. Steps Involved in Implementing a Haitian Neurosurgery Training Program Objectives 1. To design a training program that fits the needs of the trainees 2. To select appropriate training sites to implement the educational activities
3. To provide support for the fellows 4. To establish an appropriate academic framework for the implementation of the project
Curriculum and education goals adapted from UMMSM and Federation for International Education in Neurosurgery Primary training site: Bernard Mevs Hospital, which is MOH recognized and affiliated pediatric training program Secondary training sites Observership periods in the Department of Neurosurgery at the UMMSM and at Miami Children’s Hospital Education materials and stipend during training Formal agreement with the MOH of Haiti, the MSPP, and PM The candidates for training will be selected by a joint committee with multiorganizational representation from the MOH, UMMSM, HBMPM, and the MSPP. Preference will be given to junior general surgeons already working in MSPP facilities
UMMSM, University of Miami Miller School of Medicine; MSPP, Ministe`re de la Sante´ Publique et de la Population; HBMPM, Hopital Bernard Mevs/Project Medishare.
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TABLE 2. Three-Year Curriculum of Neurosurgery Training Program Curriculum for Haitian Surgeons Year of Training First year
Second year
Third year
Training Total of 3-mo rotations through neuroradiology, critical care, pediatrics, and anesthesiology. Self-guided review of neuroanatomy, neurophysiology, neurology, and clinical neurosurgery as per the UMMSM Neurosurgery curriculum Supervised basic neurosurgic techniques Basic clinical and neurologic assessment skills, to include history, physical, and neurologic examinations in adults and children Radiographic image and CT scan interpretation Critical care skills to include airway and ventilator management, resuscitation modeled after the ACLS, PALS, and ATLS programs Hemodynamic assessment and management, fluids, nutrition, and ventilator management ICP monitoring and management modeled after the American Brain Trauma Guidelines The surgical management of trauma to include craniotomy/craniectomy for hematoma, fracture, or edema. Indications for and placement of ICP monitors. Reduction and management of spine fractures Management of hydrocephalus by shunt placement or endoscopy Management and repair of children with myelomeningocele Re-enforcement of prior knowledge and skills with an incremental increase in surgical and medical responsibility Craniotomy for hemispheric tumor and meningioma Craniotomy for intracerebral hematoma Lumbar and cervical laminectomy for decompression or disk Anterior cervical decompression and fusion Encephalocele and basic craniosynostosis management Craniotomy for skull base or posterior fossa tumor Basic vascular pathology: anterior circulation aneurysm, uncomplicated AVM, cavernous malformation Intradural spinal pathology: intramedullary and extramedullary lesions Basic lumbar fusion and instrumentation Complex spinal dysraphism
CT, computerized tomography; ACLS, advanced cardiovascular life support; PALS, pediatric advanced life support; ICP, intracranial pressure; ATLS, advanced trauma life support.
most modern short-term surgical missions involve a form of involvement and education of locals, including operative skill transfer, which have proven successful in many countries to provide sustainable treatment of specific pathologies, such as hydrocephalus.29,32
THE BALANCE BETWEEN DIRECT CARE AND MEDICAL EDUCATION: TOWARD BUILDING A HAITIAN NEUROSURGERY TRAINING PROGRAM The current goal is to go beyond clinical care and provide mentorship to allow knowledge and skill transfer to the local Haitian community.20 Over the years, an effort has been made to involve Haitian surgical and pediatric residents in the assessment, operative, and postoperative management of the children. The periodic trips separated by many months made consistent involvement and education for the Haitian trainees sporadic and inconsistent. We are currently developing a 3-year postsurgery neurosurgical fellowship program in Haiti. The goal is to select a qualified candidate Haitian general surgeon who will be trained in Haiti for a 3-year period. Rotating North American volunteer neurosurgeons will serve as mentors offering continuous education. (Table 1). The training program will focus on neurosurgical pathology encountered specifically in Haiti and use techniques appropriate for resources available. The goal is a sustainable training program, with the initial graduates becoming the trainers for the future trainees. Hopefully, this model will establish a long-term Haitian solution for neurosurgical care across both urban and rural Haiti to provide neurosurgical care for all Haitians (Table 2).
CONCLUSIONS Surgical disease has recently become recognized as an important determinant of global health. Pediatric neurosurgery has generally
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been neglected in international surgical initiatives. In Haiti, the poorest country in the Western hemisphere, neurosurgical needs are currently unmet. Project Medishare and HHK have treated more than 1400 children with hydrocephalus and congenital disorders during a 10-year period. To develop a sustainable model for improved neurosurgical health, a neurosurgical training program is currently being developed and implemented.
REFERENCES 1. Central Intelligence Agency. Haiti. The World Factbook 2013–14. 2014; 2014/11/15:1–10. Available at: https://http://www.cia.gov/ library/publications/the-world-factbook/geos/ha.html. Accessed November 15, 2014 2. Sullivan SR, Taylor HO, Pauyo T, et al. Surgeons’ dispatch from Cange, Haiti. N Engl J Med 2010;362:e19 3. Farmer PE, Kim JY. Surgery and global health: a view from beyond the OR. World J Surg 2008;32:533–536 4. DeGennaro VA Jr, DeGennaro VA, Kochhar A, et al. Accelerating surgical training and reducing the burden of surgical disease in Haiti before and after the earthquake. J Craniofac Surg 2012;23 (7 suppl 1):2028–2032 5. Patel A, Pfaff M, Clune JE, et al. Disseminating surgery effectively and efficiently in Haiti. J Craniofac Surg 2013;24:1244–1247 6. Castro A, Farmer P. Infectious disease in Haiti. HIV/AIDS, tuberculosis and social inequalities. EMBO Rep 2003;4:S20–S23 7. Dewberry L, McCullough C, Goss J, et al. Trauma capacity in the central plateau department of Haiti. J Surg Res 2014;192:34–40 8. Duba RB, Hill AG. Surgery in developing countries: should surgery have a role in population-based health care? Bull Am Coll Surg 2007;92:12–18 9. Mathers CD, Loncar D. Projections of global mortality and burden of disease from 2002 to 2030. PLoS Med 2006;3:e442 10. Lopez AD, Mathers CD, Ezzati M, et al. Global and regional burden of disease and risk factors, 2001: systematic analysis of population health data. Lancet 2006;367:1747–1757 11. Wall AE. Ethics in global surgery. World J Surg 2014;38:1574–1580 #
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12. Taira BR, Kelly McQueen KA, Burkle FM Jr. Burden of surgical disease: does the literature reflect the scope of the international crisis? World J Surg 2009;33:893–898 13. Shilpakar SK. Subspecialties in neurosurgery and its challenges in a developing country. World Neurosurg 2011;75:335–337 14. de Villiers JC. A place for neurosurgery in a developing country? Surg Neurol 1996;46:403–407 15. Bernstein M. Ethical dilemmas encountered while operating and teaching in a developing country. Can J Surg 2004;47:170–172 16. Bezruchka S. Medical tourism as medical harm to the Third World: Why? For whom? Wilderness Environ Med 2000;11:77–78 17. Warf BC. The impact of combined endoscopic third ventriculostomy and choroid plexus cauterization on the management of pediatric hydrocephalus in developing countries. World Neurosurg 2013;79 (2 suppl):S23.e13–e15 18. Holcomb LO, Parsons LC, Giger JN, et al. Haitian Americans: implications for nursing care. J Community Health Nurs 1996;13: 249–260 19. Barthe´lemy EJ, Benjamin E, Edouard Jean-Pierre M, et al. A prospective emergency department-based study of pattern and outcome of neurologic and neurosurgical diseases in Haiti. World Neurosurg 2013;82:948–953 20. Wright IG, Walker IA, Yacoub MH. Specialist surgery in the developing world: luxury or necessity? Anaesthesia 2007;62 (suppl 1):84–89 21. Bae JY, Groen RS, Kushner AL. Surgery as a public health intervention: common misconceptions versus the truth. Bull World Health Organ 2011;89:394 22. Warf BC, Alkire BC, Bhai S, et al. Costs and benefits of neurosurgical intervention for infant hydrocephalus in sub-Saharan Africa. J Neurosurg Pediatr 2011;8:509–521 23. Dupuis CC. Humanitarian missions in the third world: a polite dissent. Plast Reconstr Surg 2004;113:433–435 24. Wang MY. Devastation after the Haiti Earthquake: a neurosurgeon’s journal. World Neurosurg 2010;73:438–441 25. Drake JM, Kestle JR, Milner R, et al. Randomized trial of cerebrospinal fluid shunt valve design in pediatric hydrocephalus. Neurosurgery 1998;43:294–303
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26. Chamiraju P, Bhatia S, Sandberg DI, et al. Endoscopic third ventriculostomy and choroid plexus cauterization in posthemorrhagic hydrocephalus of prematurity. J Neurosurg Pediatr 2014;13:433–439 27. Stone SS, Warf BC. Combined endoscopic third ventriculostomy and choroid plexus cauterization as primary treatment for infant hydrocephalus: a prospective North American series. J Neurosurg Pediatr 2014;14:439–446 28. Kulkarni AV, Riva-Cambrin J, Browd SR, et al. Endoscopic third ventriculostomy and choroid plexus cauterization in infants with hydrocephalus: a retrospective Hydrocephalus Clinical Research Network study. J Neurosurg Pediatr 2014;14:224–229 29. Duenas VJ, Hahn EJ, Aryan HE, et al. Targeted neurosurgical outreach: 5-year follow-up of operative skill transfer and sustainable care in Lima, Peru. Childs Nerv Syst 2012;28:1227–1231 30. Hughes SA, Jandial R. Ethical considerations in targeted paediatric neurosurgery missions. J Med Ethics 2013;39:51–54 31. Singer PA, Taylor AD, Daar AS, et al. Grand challenges in global health: the ethical, social and cultural program. PLoS Med 2007;4:e265 32. Suchdev P, Ahrens K, Click E, et al. A model for sustainable short-term international medical trips. Ambul Pediatr 2007;7:317–320 33. McIntyre T, Hughes CD, Pauyo T, et al. Emergency surgical care delivery in post-earthquake Haiti: partners in Health and Zanmi Lasante experience. World J Surg 2011;35:745–750 34. Ramachandran V, Walz J. Available at: http://www.theguardian.com/ global-development/poverty-matters/2013/jan/14/haiti-earthquakewhere-did-money-go. Accessed November 28, 2014. 35. Colin JM, Paperwalla G. Haitians. In: Lipson JG, Dibble SL, Minarik PA, eds. Culture;1; & nursing care: A pocket guide. Canada: University of California, San Francisco Nursing Press; 1996:139–154 36. Colin JM, Paperwalla G. People of Haitian Heritage. In: Purnell LD, Paulanka BJ, eds. Transcultural health care: a culturally competent approach. Philadelphia: F. A. Davis Company; 2003:70–84 37. Laguerre MS. Haitian Americans. In: Harwood A, ed. Ethnicity and Medical Care. Cambridge: Harvard University Press; 1981:172–210 38. Laguerre MS. American odyssey: Haitians in New York City. American odyssey: Haitians in New York City. Ithaca: Cornell University Press, 1984. 39. Adams P. Health-care dynamics in Haiti. Lancet 2010;376:859–860
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Pediatric Neurosurgery in the Developing World: The Haiti Experience Alexander G. Weil, MD, FRCSC, Aria Fallah, MD, MSc, Sanjiv Bhatia, MD, and John Ragheb, MD Abstract: Surgical disease has recently become recognized as an important determinant of global health. Pediatric neurosurgery has generally been neglected in international surgical initiatives. In Haiti, the poorest country in the Western hemisphere, neurosurgical needs are currently unmet. Project Medishare and Haiti Healthy Kids have treated more than 1400 children with hydrocephalus and congenital disorders for a 10-year period. To develop a sustainable model for improved neurosurgical health, a neurosurgical training program is currently being developed and implemented. Key Words: Developing, haiti, health care, hydrocephalus
are amenable to surgical correction, suggesting that the global burden of surgical disease is greater than that caused by human immunodeficiency virus, tuberculosis, and malaria combined.8,10,11 There is an unmet surgical need in low- and middle-income countries (LMICs): of the 200 million surgeries performed annually worldwide, 74% are performed in the richest third, whereas the poorest third undergo just 3.5%.3,12 In Haiti, surgical procedures have traditionally been concentrated in major cities and for patients who can afford them, leaving the vast majority of Haitian surgical diseases untreated.3,5 For example, until 2007, when the district health commissioner for central Haiti rendered all prenatal and emergency obstetric procedures (eg, cesarean sections) free, there was an almost zero rate of cesarean section and a 1.4% rate of maternal mortality per live birth in the large cities of Haiti.3
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INTRODUCING HAITI
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espite being located just 700 miles away from Miami, Florida, more than 80% of Haitians live under the poverty line.1 Government and political instability, limited natural resources, vulnerability to natural disasters, limited access to education, as well as emigration of educated professionals to developed nations have all contributed to stunting Haiti’s economy, making it the poorest nation in the Western hemisphere.1– 3 Today, Haiti is afflicted with very poor infrastructure, with inaccessible roads to rural areas, unreliable electricity, limited access to water and sewage disposal, as well as limited medical facilities, especially outside major city centers, where most of the population resides.4,5 As a result, the Haitian Government struggles to provide the population of 10 million with basic health care, especially in rural areas.6,7 Consequently, infant mortality rate is strikingly high and life expectancy is the lowest in the Western hemisphere.1
SURGICAL MISSION TO HAITI: IS THERE A ROLE FOR SURGERY? Traditionally, the public health focus worldwide and in Haiti has been on communicable diseases.3,5,6,8 Experts have dubbed surgery as ‘‘the neglected stepchild of global health,’’3 despite surgical disease being a leading cause of disability worldwide.9 A conservative estimate cites that approximately 11% of worldwide diseases From the Division of Pediatric Neurosurgery, Department of Neurosurgery, University of Miami/Miller School of Medicine, Miami Children’s Hospital, Miami, FL. Received December 18, 2014. Accepted for publication December 29, 2014. Address correspondence and reprint requests to John Ragheb, MD, Department of Pediatric Neurosurgery, Miami Children’s Hospital, 3100 SW, 62nd Ave, Miami, FL 33155; E-mail: [email protected] The authors report no conflicts of interest. Copyright # 2015 by Mutaz B. Habal, MD ISSN: 1049-2275 DOI: 10.1097/SCS.0000000000001681
The Journal of Craniofacial Surgery
A ROLE FOR PEDIATRIC NEUROSURGERY IN HAITI Although the role and impact of neurosurgery in LMICs have been controversial in the past, neurosurgical missions to LMICs have become a growing part of global health for the last 20 years.13–15 Some authors have argued that there are more pressing health issues in countries like Haiti, such as access to food, clean water, and primary health care services (eg, vaccination), and that energy and funding should go toward these services rather than subspecialty surgery.16 However, Haitian children with neurosurgical conditions deserve access to the same services available elsewhere in the world, and in 2005, the World Health Organization has made emergency care and surgical services a priority in global health.7 There is a great need in Haiti for essential pediatric neurosurgical services that are tailored to local needs.3,14 Approximately half of the surgical burden in LMICs afflicts the pediatric population, who are afflicted most commonly with congenital disorders, trauma, and malignancy.10 A third of Haiti’s population is younger than 14 years, a number that nearly doubles that of North America. Furthermore, childhood traumatic injury is a worldwide crisis, with most of these occurring in LMIC. With limited prenatal care, a high birth rate, and limited access to preventive medicine (eg, folic acid supplementation) among Haitians, spinal dysraphism rates are high.17–19 Despite the heavy burden of pediatric neurosurgical disease, neurosurgical care is provided to the population of 10 million by only a handful (n ¼ 5) of practicing neurosurgeons who service Port-au-Prince, with limited neurosurgical training as well as no formal pediatric neurosurgical training and basic resources. As a result, Haiti only has 0.05 neurosurgeons per 100,000 Haitians, compared with more than 1 neurosurgeon per 100,000 in the United States. Care for the common pediatric neurologic disease has traditionally been inadequate or not available, particularly in rural areas. Furthermore, there has been no formal neurosurgical training program based in Haiti. Over the past 3 decades, many factors such as the population growth, accelerated migration toward major cities, and expanded use of motorization without a parallel increase in infrastructure have all contributed in exacerbating the need for neurosurgical care in Haiti.
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Specialized surgery, particularly neurosurgery, has traditionally been considered impractical in resource-limited countries.17,20–22 Authors have argued that allocation of resources to high-technology services is inappropriate in countries that lack basic primary health.20 The cost of 1 complex surgery could be used to vaccinate, for example, thousands of children.20,23 However, there is sound evidence from Dr Warf’s contributions in sub-Saharan Africa and our mission in Haiti that pediatric neurosurgery is cost-effective in the developing world.22 Using a human capital approach, in which disability-adjusted life-year is used to calculate the cost averted by treating a condition, the annual economic benefit of treating the estimated 583 annual cases of hydrocephalus in Haiti would be between 6.6 and 11.3 million US dollars.
HISTORY OF PROJECT MEDISHARE AND HAITI HEALTHY KIDS Project Medishare (PM), a nongovernmental organization founded in 1994 by University of Miami physicians,4,24 has provided advanced health care, community development, and education in rural Haiti since its inauguration. Since 1998, PM has also provided support for the training of family physicians in Cap-Haitien. This successful program has been established by the Haiti Project of the Department of Family Medicine, a close partner of PM, in collaboration with the Ministry of Health (MOH) of Haiti and the medical school of the State University of Haiti. There are 15 residents in the program and 35 graduates who are now offering primary care services throughout the country. Project Medishare also fostered the development of visiting surgical specialty programs in general surgery, plastic surgery, urology, and pediatric neurosurgery. In 2003, the joint pediatric neurosurgery team from the University of Miami and Miami Children’s Hospital developed an affiliated hydrocephalus treatment program (Fig. 2), which has been supported by Haiti Healthy Kids, Inc (HHK) since 2009. Since the initial trip to Cange, Haiti in 2003, HHK has provided medical equipment and basic neurosurgical care over the past decade with approximately 10 surgical trips per year and additional interspersed assessment and follow-up visits (Fig. 1). These ‘‘vertical’’ surgical mission trips are centered on hydrocephalus care because this is a common condition that can readily be treated in a limited resource setting.3,17,22 Between 2003 and 2008, more than 300 patients were examined, with 187 receiving hydrocephalus surgery (Fig. 2). The standard first-line treatment of hydrocephalus, ventriculoperitoneal shunt insertion, comes at a price of shunt dependence and a high rate of shunt malfunction, which reaches 50% at 2 years and nearly 85%
FIGURE 1. Inaugural surgical mission of the Hydrocephalus Program in Cange, Haiti, fall of 2003.
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FIGURE 2. A, The senior author (J.R.) performing a cranial ultrasound on a child with postinfectious hydrocephalus in Haiti. B, The team performing wound care of a patient operated on for myelomeningocele repair.
at 10 years.25 Given the limited and often inexistent access to neurosurgical care, especially in rural Haiti, shunt dependence and subsequent shunt malfunctions are a dangerous, likely fatal condition in this setting. As such, as other international programs have successfully done, we have treated hydrocephalus using endoscopic techniques as a first-line measure, including endoscopic third ventriculostomy, choroid plexus cauterization, and endoscopic fenestrations of multiloculated hydrocephalus.17,24 The addition of choroid plexus cauterization to the endoscopic surgery armamentarium, which further decreases cerebrospinal fluid production, has improved our success rate at treating hydrocephalus in Haiti (Fig. 3). Because of the success rate with this technique, it has now been adopted in North American centers including our own, exemplifying how humanitarian surgical missions can contribute to improving care at home.26–28 Since 2008, approximately 200 surgeries have been performed annually. The model uses North American volunteer specialists to act as mentors and trainers for Haitian medical providers at the Hospital Bernard Mevs in Port-auPrince. These periodic trips have allowed more than 1000 children to be treated during a 10-year period. The mean annual economic benefit of this program is approximately $2.95 million.22
CHALLENGES FACED THROUGH A DECADE OF WORK IN HAITI In our efforts to provide optimal pediatric neurosurgical care to the Haitian population, we have faced obstacles and challenges, of which some are unique to Haiti and most are shared by surgical missions to other LMICs.2 –5,7,14,15,21,29–32 Challenges encountered have ranged from issues related to funding, equipment and supplies, manpower, local infrastructure, a lack of education material, tenuous government support, political instability, dealing with local policy, cultural differences, as well as climate. Since 2009, the funding of the Haiti Hydrocephalus program has been supported by HHK, Inc. This has helped finance mission trips. However, the trips are still supported almost entirely by physician’s personal expense and the majority of supplies and equipment
FIGURE 3. Endoscopic third ventriculostomy with choroid plexus cauterization. #
2015 Mutaz B. Habal, MD
Copyright © 2015 Mutaz B. Habal, MD. Unauthorized reproduction of this article is prohibited.
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recycled from our home institutions. Working in Haiti has been a lesson about learning to work in an environment where you make do with less, where nothing is wasted and everything possible is resterilized and reused. Although the earthquake that devastated Haiti in 2010 brought global awareness and massive funds to Haiti, of which most went to health-related causes, 4 years later, only a minority has made it to local organizations and hospital infrastructure remains insufficient.2,20,33,34 In one of the most advanced hospitals of Port-au-Prince, modern neurosurgical equipment is nonexistent and nearly all equipment used by our group comes from recycled or donated supplies (endoscopes, shunts, medicines, bandages, etc) brought by our team. Although the quality and completeness of equipment are not like those of the United States, this has not stopped us from treating basic pediatric neurosurgical conditions, such as myelomeningocele and hydrocephalus. Providing neurosurgical care in this setting is a fine balance between providing the best possible care under suboptimal conditions while avoiding interventions in which the suboptimal infrastructure puts the patient at unacceptable risk. As such, taking on neurosurgical cases more complex than the local infrastructure permits would be unethical, as would performing surgeries beyond the scope of one’s subspecialization.15 To exemplify, this is the case of a blind, bedridden 7-year-old boy with a posterior fossa medulloblastoma who was transferred to Bernard Mevs Hospital during a recent mission trip and in whom intervening would not only have been unfeasible, it would have been futile, because insufficient surgical instruments to perform the surgery, no access to ICU for postoperative monitoring and ventilation, as well as no ready access for proper oncological follow-up and adjuvant treatment would make the risks of care unacceptable and accelerate the inevitable.21 Sensitivity to the cultural differences in Haiti has been an important aspect in providing adapted neurosurgical care.35–38 The way in which you are perceived as a neurosurgeon is not as inherently thought. For example, because medical services are usually paid services, Haitians often feel that services offered at clinics or through Medicaid are inferior because they are free. Haitian’s cultural perception of disease and modern medicine as well as the health care worker to patient relationship are vastly different in Haiti than in North America. Traditional community healers and their influence on society play a significant part in the health care orientation of the population.18,35,36 Illnesses are thought to have either natural or supernatural causes, which are believed to result from either an imbalance with nature or caused by God, respectively. Natural illnesses can also be caused by sympathetic magic, where illnesses are caused by voodoo dolls and magicoreligious beliefs (eg, a knife under the bed will cut labor pain).35,36 There are also differences among
Pediatric Neurosurgery in Haiti
Haitians: urban Haitians are often receptive to modern medical care than rural migrants who gravitate toward traditional medical care. For these reasons and because of the long distances at high costs that must be travelled by rural Haitians to seek medical attention, they typically present at late stages of disease course. Haitians also fear blood transfusions and surgery, especially abdominal surgery. In addition, there are cultural differences in the way Haitian’s experience symptoms. Pain, for example, is believed to affect whole body system, rendering the localization and origin of the pain source unimportant and making descriptions of pain vague.36–38 In Haiti, the right balance of intervention is not easy to obtain. Overzealous help from well-intended but misguided North American surgeons can ‘‘first do harm.’’ This was especially true after the 2010 earthquake when many surgeons volunteered to help, although they had little experience working in a resource-poor environment or with the extreme pathology. It is unacceptable, even in resourceinsufficient Haiti, to provide substandard care below what would be acceptable for a child in a developed nation because of the perception that some care is better than none.15 Furthermore, the influx of foreign physicians can cause local private clinics to lose business, displacing Haitian medical professionals, who have to compete for patients in a marketplace dominated by volunteers.39
OTHER STRATEGIES FOR NEUROSURGICAL CARE DELIVERY IN LMICS The short-term surgical mission model, such as the Hydrocephalus Program of HHK, has been applied to successfully treat many different pathologies throughout the developing world.3,29,30 They represent a compromise from the missionary surgeon model, in which a surgeon lives in the country over an extended period of time, providing direct continuous care while training locals. Success of these short-term surgical missions relies on 7 principles, which include having a clear purpose, collaboration with the local community, education, service adapted to the local’s needs, multidisciplinary teamwork, outcome evaluation, and striving for sustainable change.30,32 There are pitfalls to this type of program. Some authors have argued that it is impractical, costly, and offers no long-term sustainable solution.21,32 In addition, although this model has been shown to work well for certain selective pathologies, such as cleft lip and palate deformities and chronic hydrocephalus, it has limitations in pediatric neurosurgery where indications are often not elective.29 Given the relative poor reporting of outcome and limited follow-up after short-term missions worldwide, many authors have questioned the actual effectiveness and, more importantly, morbidity, which are generally not well documented or reported.16,23 For all these reasons,
TABLE 1. Steps Involved in Implementing a Haitian Neurosurgery Training Program Objectives 1. To design a training program that fits the needs of the trainees 2. To select appropriate training sites to implement the educational activities
3. To provide support for the fellows 4. To establish an appropriate academic framework for the implementation of the project
Curriculum and education goals adapted from UMMSM and Federation for International Education in Neurosurgery Primary training site: Bernard Mevs Hospital, which is MOH recognized and affiliated pediatric training program Secondary training sites Observership periods in the Department of Neurosurgery at the UMMSM and at Miami Children’s Hospital Education materials and stipend during training Formal agreement with the MOH of Haiti, the MSPP, and PM The candidates for training will be selected by a joint committee with multiorganizational representation from the MOH, UMMSM, HBMPM, and the MSPP. Preference will be given to junior general surgeons already working in MSPP facilities
UMMSM, University of Miami Miller School of Medicine; MSPP, Ministe`re de la Sante´ Publique et de la Population; HBMPM, Hopital Bernard Mevs/Project Medishare.
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TABLE 2. Three-Year Curriculum of Neurosurgery Training Program Curriculum for Haitian Surgeons Year of Training First year
Second year
Third year
Training Total of 3-mo rotations through neuroradiology, critical care, pediatrics, and anesthesiology. Self-guided review of neuroanatomy, neurophysiology, neurology, and clinical neurosurgery as per the UMMSM Neurosurgery curriculum Supervised basic neurosurgic techniques Basic clinical and neurologic assessment skills, to include history, physical, and neurologic examinations in adults and children Radiographic image and CT scan interpretation Critical care skills to include airway and ventilator management, resuscitation modeled after the ACLS, PALS, and ATLS programs Hemodynamic assessment and management, fluids, nutrition, and ventilator management ICP monitoring and management modeled after the American Brain Trauma Guidelines The surgical management of trauma to include craniotomy/craniectomy for hematoma, fracture, or edema. Indications for and placement of ICP monitors. Reduction and management of spine fractures Management of hydrocephalus by shunt placement or endoscopy Management and repair of children with myelomeningocele Re-enforcement of prior knowledge and skills with an incremental increase in surgical and medical responsibility Craniotomy for hemispheric tumor and meningioma Craniotomy for intracerebral hematoma Lumbar and cervical laminectomy for decompression or disk Anterior cervical decompression and fusion Encephalocele and basic craniosynostosis management Craniotomy for skull base or posterior fossa tumor Basic vascular pathology: anterior circulation aneurysm, uncomplicated AVM, cavernous malformation Intradural spinal pathology: intramedullary and extramedullary lesions Basic lumbar fusion and instrumentation Complex spinal dysraphism
CT, computerized tomography; ACLS, advanced cardiovascular life support; PALS, pediatric advanced life support; ICP, intracranial pressure; ATLS, advanced trauma life support.
most modern short-term surgical missions involve a form of involvement and education of locals, including operative skill transfer, which have proven successful in many countries to provide sustainable treatment of specific pathologies, such as hydrocephalus.29,32
THE BALANCE BETWEEN DIRECT CARE AND MEDICAL EDUCATION: TOWARD BUILDING A HAITIAN NEUROSURGERY TRAINING PROGRAM The current goal is to go beyond clinical care and provide mentorship to allow knowledge and skill transfer to the local Haitian community.20 Over the years, an effort has been made to involve Haitian surgical and pediatric residents in the assessment, operative, and postoperative management of the children. The periodic trips separated by many months made consistent involvement and education for the Haitian trainees sporadic and inconsistent. We are currently developing a 3-year postsurgery neurosurgical fellowship program in Haiti. The goal is to select a qualified candidate Haitian general surgeon who will be trained in Haiti for a 3-year period. Rotating North American volunteer neurosurgeons will serve as mentors offering continuous education. (Table 1). The training program will focus on neurosurgical pathology encountered specifically in Haiti and use techniques appropriate for resources available. The goal is a sustainable training program, with the initial graduates becoming the trainers for the future trainees. Hopefully, this model will establish a long-term Haitian solution for neurosurgical care across both urban and rural Haiti to provide neurosurgical care for all Haitians (Table 2).
CONCLUSIONS Surgical disease has recently become recognized as an important determinant of global health. Pediatric neurosurgery has generally
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been neglected in international surgical initiatives. In Haiti, the poorest country in the Western hemisphere, neurosurgical needs are currently unmet. Project Medishare and HHK have treated more than 1400 children with hydrocephalus and congenital disorders during a 10-year period. To develop a sustainable model for improved neurosurgical health, a neurosurgical training program is currently being developed and implemented.
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12. Taira BR, Kelly McQueen KA, Burkle FM Jr. Burden of surgical disease: does the literature reflect the scope of the international crisis? World J Surg 2009;33:893–898 13. Shilpakar SK. Subspecialties in neurosurgery and its challenges in a developing country. World Neurosurg 2011;75:335–337 14. de Villiers JC. A place for neurosurgery in a developing country? Surg Neurol 1996;46:403–407 15. Bernstein M. Ethical dilemmas encountered while operating and teaching in a developing country. Can J Surg 2004;47:170–172 16. Bezruchka S. Medical tourism as medical harm to the Third World: Why? For whom? Wilderness Environ Med 2000;11:77–78 17. Warf BC. The impact of combined endoscopic third ventriculostomy and choroid plexus cauterization on the management of pediatric hydrocephalus in developing countries. World Neurosurg 2013;79 (2 suppl):S23.e13–e15 18. Holcomb LO, Parsons LC, Giger JN, et al. Haitian Americans: implications for nursing care. J Community Health Nurs 1996;13: 249–260 19. Barthe´lemy EJ, Benjamin E, Edouard Jean-Pierre M, et al. A prospective emergency department-based study of pattern and outcome of neurologic and neurosurgical diseases in Haiti. World Neurosurg 2013;82:948–953 20. Wright IG, Walker IA, Yacoub MH. Specialist surgery in the developing world: luxury or necessity? Anaesthesia 2007;62 (suppl 1):84–89 21. Bae JY, Groen RS, Kushner AL. Surgery as a public health intervention: common misconceptions versus the truth. Bull World Health Organ 2011;89:394 22. Warf BC, Alkire BC, Bhai S, et al. Costs and benefits of neurosurgical intervention for infant hydrocephalus in sub-Saharan Africa. J Neurosurg Pediatr 2011;8:509–521 23. Dupuis CC. Humanitarian missions in the third world: a polite dissent. Plast Reconstr Surg 2004;113:433–435 24. Wang MY. Devastation after the Haiti Earthquake: a neurosurgeon’s journal. World Neurosurg 2010;73:438–441 25. Drake JM, Kestle JR, Milner R, et al. Randomized trial of cerebrospinal fluid shunt valve design in pediatric hydrocephalus. Neurosurgery 1998;43:294–303
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26. Chamiraju P, Bhatia S, Sandberg DI, et al. Endoscopic third ventriculostomy and choroid plexus cauterization in posthemorrhagic hydrocephalus of prematurity. J Neurosurg Pediatr 2014;13:433–439 27. Stone SS, Warf BC. Combined endoscopic third ventriculostomy and choroid plexus cauterization as primary treatment for infant hydrocephalus: a prospective North American series. J Neurosurg Pediatr 2014;14:439–446 28. Kulkarni AV, Riva-Cambrin J, Browd SR, et al. Endoscopic third ventriculostomy and choroid plexus cauterization in infants with hydrocephalus: a retrospective Hydrocephalus Clinical Research Network study. J Neurosurg Pediatr 2014;14:224–229 29. Duenas VJ, Hahn EJ, Aryan HE, et al. Targeted neurosurgical outreach: 5-year follow-up of operative skill transfer and sustainable care in Lima, Peru. Childs Nerv Syst 2012;28:1227–1231 30. Hughes SA, Jandial R. Ethical considerations in targeted paediatric neurosurgery missions. J Med Ethics 2013;39:51–54 31. Singer PA, Taylor AD, Daar AS, et al. Grand challenges in global health: the ethical, social and cultural program. PLoS Med 2007;4:e265 32. Suchdev P, Ahrens K, Click E, et al. A model for sustainable short-term international medical trips. Ambul Pediatr 2007;7:317–320 33. McIntyre T, Hughes CD, Pauyo T, et al. Emergency surgical care delivery in post-earthquake Haiti: partners in Health and Zanmi Lasante experience. World J Surg 2011;35:745–750 34. Ramachandran V, Walz J. Available at: http://www.theguardian.com/ global-development/poverty-matters/2013/jan/14/haiti-earthquakewhere-did-money-go. Accessed November 28, 2014. 35. Colin JM, Paperwalla G. Haitians. In: Lipson JG, Dibble SL, Minarik PA, eds. Culture;1; & nursing care: A pocket guide. Canada: University of California, San Francisco Nursing Press; 1996:139–154 36. Colin JM, Paperwalla G. People of Haitian Heritage. In: Purnell LD, Paulanka BJ, eds. Transcultural health care: a culturally competent approach. Philadelphia: F. A. Davis Company; 2003:70–84 37. Laguerre MS. Haitian Americans. In: Harwood A, ed. Ethnicity and Medical Care. Cambridge: Harvard University Press; 1981:172–210 38. Laguerre MS. American odyssey: Haitians in New York City. American odyssey: Haitians in New York City. Ithaca: Cornell University Press, 1984. 39. Adams P. Health-care dynamics in Haiti. Lancet 2010;376:859–860
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