The Cleft Infant Nutrition Program Partner for Surgery started with our sister organization in Guatemala six years ago has become a critical part of health care in rural Guatemala for children born with this defect. Eighty per cent of the children in the program are referred to us by midwives and local health promoters which means children and families get attention in lactation assistance, nutrition education and the care and feeding of cleft children shortly after the child is born. However, when children are not enrolled within a few days after birth, dehydration, malnutrition, and illness are the norm.
Ruth Arias and her family live in the very small rural village of El Remolino 75 miles from a regional hospital. When Ruth’s mother, Herly, saw Ruth at birth, she became distraught and developed emotional and physical problems. Ruth has a cousin with a cleft and no one imagined another child would be born in the family with a similar problem. Ruth was not well cared for and her life was in danger. She was almost one month old before Julio, a health promoter with our Guatemalan sister organization, Asociacion Companero para Cirugia, learned of Ruth and enrolled her in the Nutrition Program and assisted Ruth’s mother. Because of the support provided by the program, both Ruth and Herly’s health improved and Ruth was able to qualify for surgery when she was 10 months old. Under the guidance and support of Julio, Ruth has had her lip repaired and within a few months we hope she will be ready for surgery on her palate and start speech therapy. Herly was almost speechless after Ruth’s surgery, but managed to say, “The help provided by Companero para Cirugia made this miracle possible - thank you, thank you, thank you.”
Since our report to you three months ago, 60 children from this program have received corrective surgery from the San Francisco Bay Area Faces of Hope team. This experience of the Arias family is similar to the other 165 children who already received corrective surgery this year in large part because of your financial support. Please encourage your friends to be a part of this unique program that helps children and their families to better health.
Marcelo lives near the village of Purula in the Guatemalan department of Alta Verapaz. He is basically a subsistence farmer who supports his family of eight by growing corn, beans and broccoli. In 2014 he became concerned about a growing mass on the side of his neck and went to a nearby medical evaluation clinic organized by our Guatemalan partner, Companero para Cirugia. He needed surgery but unfortunately no team was available in 2014 or 2015 with the required surgical capabilities to deal with his complex tumor.
Everyone could see Marcelo was becoming desperate since the movement of his head was now significantly affected. He knew that soon he would not be able to work in his field and provide for his family. Fortunately, Dr. Elwood McMullin agreed that his 2016 Cape Breton Nova Scotia team could provide the surgery when they came to Guatemala. With the skills of this Canadian volunteer team and the support we provided for Marcelo’s transportation, lodging and post-operative care, the procedure was a big success. Immediately after the surgery he looked in a mirror and said “IT HAS BEEN A LONG TIME SINCE I HAD A SMILE ON MY FACE. TODAY I CAN SMILE AGAIN. I AM THE MARCELINO FROM BEFORE THIS MASS”.
There have been 201 other examples of individuals receiving needed critical surgical care since our report three months ago. Of these, 50 patients received a corrective procedure for a cleft defect by the Faces of Hope surgical team and, once again, the team commented on how healthy the children were because of our Cleft Infant Nutrition program. Over these last three months two teams of medical volunteers went to eight rural villages and, from 1021 medical evaluations, 434 individuals were identified who needed surgery. Also during these village clinics, 481 cervical cancer prevention exams and 144 breast mass evaluations were provided.
All these rural evaluations and surgical procedures are done by volunteer doctors from the USA and Canada who pay their own expenses. However, preparations for rural clinics, scheduling and escorting patients, post-operative care, team logistics and record keeping is done with your financial support. This medical care allowing thousands of individuals to be independent is only possible when we combine financial resources with the willing volunteerism of so many in North America. We hope you will consider continuing your support. More information can be found on our website: www.partnerforsurgery.org.
In this report to our Global Giving donors I would like to focus on the story of a little boy named Jacinto Sanchez and also tell you about Partner for Surgery’s efforts to reduce the incidence of cleft lip and palate in rural areas of Guatemala.
Jacinto was born with a severe cleft lip and palate in the rural Guatemala area of Nebaj, Quiche. His parents, Jose and Maria, agonized over his care and the future that surely awaited a child with his deformity. Then a Partner for Surgery health promoter told them corrective surgery was possible, but the doctors would only accept healthy children and Jacinto was too malnourished to qualify. Maria and Jose quickly agreed to in enroll Jacinto in Partner for Surgery’s Cleft Infant Nutrition Program and received in home care training. They followed procedures, used formula provided by the health promoter and Jacinto became a happy baby and gained the weight needed to qualify.
In April of 2015, when Jacinto was five months old, our health promoter took Jacinto and his parents to Antigua where his lip was repaired by the Free to Smile surgical team. He returned to his village and in the spring of 2016, we brought Jacinto to the team from Children’s Hospital of Philadelphia which closed his palate. When we asked Maria how she felt after the palate surgery, she said, “Today my boy is a normal boy. When he was born I wanted to hide him; I was scared of him. Now he is beautiful and he is complete.”
As of this report we have 156 children in the Nutrition Program and are on track to provide almost 200 children with cleft repairs this year.
Jacinto is the only child of Jose and Maria because they worry more children might be born with the same defects. Partner for Surgery’s experience over fifteen years shows no reduction in the incidence of cleft defects. We know something needs to be done – and have begun the process:
To address the high incidence of clefts in Guatemala, Partner for Surgery enlisted the George Washington University School of Public Health to lead a workshop on congenital malformations, held June 14 and 15, 2016 in Guatemala City. There were 80 participants, including leading organizations in Guatemala and the Guatemalan government. The workshop summary and recommendations are now being prepared. It was clear from the many presentations, however, that while genetic predisposition is important, microtoxins coming up through the food chain are considered the most influential factor in causing these malformations. More directed research is required and remediation efforts initiated.
We know many families here in Guatemala who share the concerns of Jacinto’s parents and that this prevention effort will be extremely important to future generations. We need to help these innocent children born with life threatening clefts and in parallel begin the process to reduce the occurrence. We have started our journey – and hope we can make real progress with your continued financial support.