Congenital Anomalies in Guatemala: Causes and Actions
Congenital defects are a group of conditions with devastating consequences for affected individuals and their families. They are often neglected as public health policy priorities. Information that some congenital anomalies might be occurring more frequently in Guatemala compared to other countries sparked interest in an initiative to find out what is known about the risks for these defects and what the gaps are in the knowledge that can lead to the prevention of congenital birth defects in Guatemala.
The genesis of this initiative was a request to the GW Milken Institute School of Public Health by Partner for Surgery, an organization that has been working in Guatemala to facilitate surgeries for members of remote, primarily indigenous communities. Partner for Surgery’s board members and surgeon volunteers noticed what they thought was an unusual number of children born with cleft lip and or cleft palate. They wanted to find out more about the etiology of the condition and whether anything could be done to prevent it. Two students conducted a literature review of cleft. Their findings confirmed that Guatemala, compared to other nations, seems to be experiencing an increased risk of cleft lip/palate and identified a series of potential nutritional and environmental risk factors. Partner for Surgery’s search for partners in prevention efforts led to a partnership between the GW Milken Institute School of Public Health, Universidad Rafael Landívar in Guatemala, Partner for Surgery, its Guatemalan partner, Asociación Compañero Para Cirugía, and Chabil Ixim for the organization of a two-day workshop to bring together individuals from hospitals, the public sector, academia and research and civic organizations to present and discuss current knowledge and experiences on congenital defects in Guatemala, with emphasis on Alta Verapaz. The partnership continues and GW SPH and Universidad Rafael Landívar are exploring new initiatives, including involving their students in generating information about this topic. This web page has been created to house and make available information generated through those efforts.
Las anomalías congénitas son un conjunto de condiciones de salud con consecuencias devastadoras para las personas, sus familias, desafiando a los sistemas de atención médica para responder a sus múltiples demandas. Es una de las prioridades políticas de salud con frecuencia subestimada, la necesidad de abordar su prevención primaria motivó una iniciativa coordinada para reunir el conocimiento actual y la experiencia en Guatemala.
Esta iniciativa tiene raíz en una solicitud a la Escuela de Salud Pública del Instituto Milken de George Washington University (GW SPH) por Partner for Surgery, una organización que ha estado trabajando en Guatemala para facilitar cirugías a miembros de comunidades indígenas. El personal de Partner for Surgery y los médicos voluntarios observaron un número inusual de niños nacidos con labio leporino o paladar hendido. Ellos querían saber más sobre la etiología de la condición y como prevenirla. Dos estudiantes realizaron una revisión bibliográfica de la hendidura. Sus hallazgos confirmaron que Guatemala, en comparación con otras naciones, parece estar experimentando un mayor riesgo de fisura labial / paladar e identificó una serie de potenciales factores de riesgo nutricional y ambiental. Partner for Surgery formó una asociación entre GW SPH, la Universidad Rafael Landívar en Guatemala, Partner for Surgery, su compañero guatemalteco, Asociación Compañero Para Cirugía y Chabil Ixim para facilitar la organización de un taller de dos días donde se reunieron representantes de hospitales, el sector público, academia e investigación y organizaciones cívicas para presentar y discutir los conocimientos y las experiencias actuales relacionadas a las anomalías congénitas en Guatemala, con énfasis en Alta Verapaz. La asociación continúa y GW SPH y la Universidad Rafael Landívar están explorando nuevas iniciativas, incluyendo la participación de sus estudiantes en la generación de información sobre este tema. Esta página web ha sido creada para albergar y poner a disposición la información generada a través de los esfuerzos de esta colaboración.
Analytical Literature Review of Cleft Lip and Palate
by Roshni Biswas and Vivian Tao
Slide Presentation (English)
Workshop: CONGENITAL ANOMALIES IN GUATEMALAN CHILDREN: CAUSES AND ACTIONS: Multiple causes, multiple impacts, multiple approaches, held in Guatemala, June 14-15, 2016.
Report (Spanish)
Slide Presentations (Spanish)
Introduction – Dr. Carlos Santos Burgoa
- Congenital birth defects and cancer in Guatemala (Medicine and Health) - Malformaciones congénitas y cáncer de hígado en Guatemala
i.Panel of experts – Panel de expertos
Presentations:
#1.1 Major congenital anomalies-Anomalias mayores congenitas-Dr. Julio Cabrera V
#1.2 Spina bifida and hydrocephaly unit- Unidad de espina bifida e hidrocefalia-Dr. Graciela Mannucci
#1.3 Heptic cancer in Guatemala- Cancer hepatico en Guatemala- Dr. Eduardo Gharzouzi
#1.4
#1.5 Preliminary results: Incidence of a congenital anomaly registry in Chimaltenango, Guatemala- Incidencia de anomalias congenitas en Chimaltenango, Guatemala: Hallazgos
- Nutrition and genetics of congenital anomalies - Nutrición y genética de las malformaciones congénitas
i.Panel of Experts – Panel de Expertos
Presentations:
#2.1 Micronutrient deficiencies and congenital anomalies – Deficiencias de micronutrients y anomalías congénitas – Manolo Mazariegos
#2.2 Food and nutrition security – Seguridad alimenticia y nutricional – Gabriela Rosas
#2.3 Malnutrition and congenital anomalies – Desnutrición y anomalías congénitas – Miguel Angel Soto Galindo
#2.4 Micronutrients and Nixtamalization – Micronutrientes y Nixtamalización – Patricia Palacios de Palomo
ii.Community experiences - Experiencias comunitarias
Presentations:
#1 Partner for Surgery Asociation – Asociación Compañero Para Cirugía – Mynor Alvarez
#2 Pre- and post-surgery orthopedic treatment in patients with cleft lip/palate – Tratameinto de ortopedia pre y postquirurgíca en pacientes con labio y paladar hendido (LPH) – Vilma Arteaga
#3 Telemedicine (community e-health system): Producing primary care results – Telemedicina (Sistema de e-salud comunitario): Produciendo resultados en el primer nivel de atención – Isabel Lobos
#4 P4P “Purchase for Progress” Guatemala: A tool to combat hunger and Blue box – P4P “Compras para el Progreso” Guatemala: Una herramienta para combater el hambre y la Caja Azul – Irma Palma
- Environmental conditions and their relationship to birth defects
i.Panel of Experts
Presentations
#3.1 Environmental conditions and their link to congenital anomalies: Mycotoxins in corn – Condiciones ambientales y su relación con las malformaciones congénitas: Micotoxinas del maíz – Olga R Torres
#3.2 Fungi that produce mycotoxins: Description, characteristics, effects to the agro-nutritional chain – Hongos productores de micotoxinas: Descripción, características, efectos en la cadena agroalimentaria – Mario Fuentes
#3.3 Nutritional diversification: The new national rural extension system for food safety and nutritional strategy -- Deversificación alimentaria: La nueva estrategia de seguridad alimentaria y nutricional (SAN) del sistema nacional de extension rural (SNER) – Sergio Ruano
#3.4 Post harvest management of maize (Zea mays) for the reduction of aflatoxins and fumonisins in maize cultivated and consumed in the Department of Huehuetenango, Guatemala -- Manejo post cosecha de maíz (Zea mays) para la reducción de aflatoxinas y fumonisinas en maíz cultivado y consumido en el Departamento de Huehuetenango, Guatemala – Ana Silvia Comenares de Ruiz
#3.5 Local experiences to prevent contamination of grains – Experiencias locales para prevenir la contaminación de granos – Paul Orozco
#3.6 Use of wood in Guatemala and Alta Verapaz – Situación de uso de leña en Guatemala y Alta Verapaz – Richard Grinnell
#3.7 Community development and sustainability: The role of socio economic components in nutritional and environmental programs – Desarrollo comunitario: El papel del componente socio económico en los problemas nutricionales y ambientales – sostenibilidad – José Luis Loarca
#3.8 Use of agrochemicals in agricultural production – Uso de agroquímicos en la producción agrícola – Alberto Mazariegos
#3.9 Micotoxins: general information and importance in health and nutritional safety – Generalidades, definición e importancia en el area de salud e inocuidad alimentaria de las micotoxinas – Sunny Morataya
Technical Reports
The following technical reports were authored by GW School of Public Health Students who have been conducting research on de-identified data on children who received treatment (IRB#101608 (27946)) to meet the Master of Public Health Culminating Experience Requirement. The de-identified data were provided by SmileTrain, an international NGO, which organizes cleft lip and palate treatment for affected families in Guatemala. The organization provides training, funding, and resources to for local doctors in 85+ developing countries to provide free cleft repair treatment and comprehensive cleft care in their own communities.
Partners
Universidad Rafael Landívar
Instituto de Investigación y Estudios Superiores en Ciencias de la Salud - IECIS
Partner for Surgery and Asociación Compañero Para Cirugía (Guatemala subsidiary)