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.
In this report I would like to focus on how Partner for Surgery, a U.S. based charity, provides surgical care to rural Guatemalan communities. It can be summed up in one sentence----we use health promoters who live in the communities. The day to day efforts of these health promoters are managed by our Guatemalan partner organization, Asociacion Companero para Cirugia. These health promoters prepare for our teams of volunteer doctors and nurses from North America and Guatemala who do patient evaluations at locations close to where the patients live. Spending one day in each of four villages during a week this past June, 275 candidates for surgery were identified. These individuals have now been put into our system to be scheduled and escorted to surgical sites. I would like to share with you three vignettes from this week:
Many people, such as 6 year old Manuel and his mother, knew of us through neighbors, friends or family members. We repaired Manuel’s cleft lip several years ago and now he came to have his cleft palate repaired. Without the closure of his palate, his speech would be very difficult to understand and he would remain at risk for respiratory infections. Since antibiotics are not readily available or affordable in rural communities, without surgery Manuel could develop a life threatening condition. Standing next to Ariel Marroquin, the Director of Operations, the mother’s smile reflects her comment spoken in the local K’iche language: “I am very confident Manuel will have a bright future after his surgery”.
Most of our patients have surgical needs common throughout the world. However, in rural Guatemala problems are seen that should have been addressed when the problem was first noticed but by waiting, the problem has become a major issue. This is the case of a young man named Juan who was evaluated by the Canadian volunteer Dr Karen McIntyre. Removal of Juan’s facial growth now will require several surgical specialties whereas if it had been done earlier the procedure would have been far less complicated.
At the end of the week I was approached by a woman who immediately remembered me from 13 years ago. As soon as she showed me her feet, I remembered her, Alicia. She had come to us barely able to walk because of two club feet. As a teenager, she had few prospects for a life outside the family home - but now she is married with two children and her smile reflects how that surgical repair 13 years ago changed her life. For me, that was the highlight of the week and once again reminded me of the importance of the work of Partner for Surgery.
All of the patients from this week of evaluation will be scheduled for surgery. We accomplish our mission with local Guatemalans, volunteer medical professionals and the support of donors such as you. We ask that you please continue to help us so we can continue to help others like Manuel, Juan and Alicia. The work goes on – to date, our organization has given the opportunity for surgery to over 11,000 rural, impoverished Guatemalans and the need is there to provide life changing help to many more.
I would like to share with you the story of Yefri, a child in our Cleft Infant Nutrition Program. He was born February 19, 2013 in a rural community in Baja Verapaz, Guatemala with a severe cleft lip and open palate. Yefri had great difficulty nursing, became extremely undernourished, and, in all likelihood would not have survived without intervention. Thankfully, when Yefri was a month old, his family heard about a Partner for Surgery medical mission working nearby and brought him in for evaluation. And so began the 34 month effort for Yefri to become a normal, healthy child. He was placed in our Infant Nutrition program and his family trained in cleft infant care. His progress was monitored, surgeries scheduled, and his family instructed in the speech therapy so necessary to blend in with the other children in his community.
Yefri had his first surgery at 5 months but his lip opened again shortly after returning home. At 15 months, his palate was repaired but he began to recognize that he was different from other children and pulled at the flap forming part of his lip. At 26 months, he was pointing to other normal children and definitely ready for the surgery to correct his upper jaw and lip. Yefri’s mother was excited and anxious for the surgery because she knew her son desperately needed it and also would get wonderful care. As you can see from the photo just before his final surgery, Yefri needed extensive corrective procedures. After three hours of surgery, his surgeon, Dr. Virnelli of the Free to Smile team, said “Definitely one of the most challenging cases I’ve done in my life – and also the most satisfying.”
Yefri’s experience is unusual only in that he needed three surgical procedures instead of two and that his cleft lip and palate were more extensive than some of our other small patients. Partner for Surgery and the volunteer medical teams are grateful for the financial support from GlobalGiving which allowed us to prepare Yefri for a normal, productive life. Since our last report, 36 additional children have received cleft surgery and 142 are in our nutrition program getting healthy enough for the operations that will transform their lives. I hope from the bottom of my heart that you will continue to support our efforts.