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  • Pilas Pachalajay San Lucas

Spina Bifida


Spina Bifida is a Neural Tube Defect and sadly, Guatemala has one of the highest incidences worldwide in newborns with roughly 5,000 cases per year. It is important that the Spina Bifida gets operated on immediately after birth. This also reduces the probability that the child develops hydrocephalus later on. However, if the child does develop hydrocephalus, it should be operated on as soon as possible as well. Two methods exist for this procedure: the insertion of a shunt (a special valve), or a neuroendoscopic procedure known as “third ventriculostomy” – both procedures will lead to the drainage of cerebrospinal fluid from the head (this fluid causes the head to swell when it cannot drain when the natural drainage paths are obstructed). The shunts pose certain risks of infection, especially since manytimes they need to be replaced in patients. Therefore, the third ventriculostomy is the better choice for many patients, but not all of them qualify for this procedure because of medical reasons.

What we have done so far, and what are our future plans:
1) We started working in this area in 2004 with a shunt bank which made it possible that many children who had developed hydrocephalus and whose parents could not afford to purchase the shunts, could be operated on.

2) Since March 2005, we have executed 5 Matching Grants totaling more than $150,000.--. These funds were invested in valves, operations, prostheses, special wheelchairs, and a neuroendoscope (used for the third ventriculostomy mentioned above), etc., but also in education and prevention seminars focusing on a balanced diet and the importance of the intake of folic acid by girls and women of childbearing age. The beneficiaries of all these efforts number in the thousands. Currently, we are working on our first Global Grant for Spina Bifida of approx. $ 75,000.

3) Our own club contributes heavily to this cause. The proceeds from our major fundraiser, the “Festival Gastronómico”, 2007, 2008 and 2009 editions, totaling more than $ 100,000, were earmarked for the Spina Bifida project, and with these funds we were able to build a brandnew Spina Bifida wing in the Hospital General San Juan de Dios in Guatemala-City, which was inaugurated in the second half of 2010 by the Secretary of Health of Guatemala and the hospital director. A good part of the equipment and furniture of this SB wing was donated by the local “Asociación de Damas Diplomáticas” and we are very thankful for this cooperation.

4) Our Spina Bifida project was voted “The most transcendent project in Central America” at the Rotary Fair held in Antigua at the beginning of 2010.

5) We will continue our efforts to help bring down the numbers of newborns with Spina Bifida, reducing the suffering – both emotionally and financially - for the families in particular and for society as a whole. Therefore, we want to do more in the area of prevention, continuing with the education/prevention seminars on a wider scale, but adding also a widespread distribution of multivitamin pills including folic acid especially in the areas with the highest incidence of newborns with SB. At the same time, we need to continue to help the babies who are born with SB. A second, different neuroendoscope will be required in the Hospital San Juan de Dios so a wider range of operations can be performed. Prostheses and special wheelchairs will also to be needed in the future, and older patients with SB may need different operations. If possible, we would also like to assist people with SB financially with job training etc. so they can become more independent and useful for their families and society.

We are very thankful for all the help received over the years for this project, especially from the Rotary Foundation, but also from many clubs and districts (to name the most important ones: Leavenworth/WA, Portland/OR, Utah, and many others). Without them, it would have been impossible to achieve what we have been able to do.