Health
 Guatemala
Project #14869

Surgery for Guatemalans with Cleft Lip and Palate

by Partner for Surgery
Vetted
Jacinto Sanchez
Jacinto Sanchez

 

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.

Partner for Surgery Initiated Workshop
Partner for Surgery Initiated Workshop

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Yefri before last surgery
Yefri before last surgery

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. 

Yefri after surgery
Yefri after surgery

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Dulce before her cleft lip and palate surgery
Dulce before her cleft lip and palate surgery

Dulce was born February 10, 2015. Dulce's parents Brenda and Walter immediately gave thanks to God for the birth of their daughter, but were shocked and frightened when they learned of her cleft lip and palate. They asked in despair, why, God? How will she nurse? What kind of a life will she lead with this shame? We have no money to help our daughter - what will we do?

After hearing about Partner for Surgery’s work helping poor villagers like themselves, Dulce’s parents brought her to be seen by one of our volunteer medical teams. Brenda and Walter learned about Partner for Surgery’s Nutrition Project to deliver lifesaving nourishment to cleft infants, and our volunteer surgical teams to repair the birth defects. They knew they were truly blessed when they learned that the expenses to correct Dulce’s cleft lip and palate would be covered by donations from our generous supporters.

A Partner for Surgery health promoter traveled to her family home and evaluated Dulce’s progress monthly. The little girl thrived in the Nutrition Program and grew quickly. She received her first successful surgery for cleft lip in July 2015, and received her second successful surgery for cleft palate four short months later in November.

Brenda and Walter are so grateful to God for the miracle Partner for Surgery brought to their family. Following Dulce’s second surgery in November, here is what they had to say: "Thank you Partner for Surgery! We know God will pour out many blessings upon you this Christmas, and wish you prosperity for the coming year so you can continue your blessed work."

As she approaches her second birtnday, Dulce is walking and smiling. She is beginning to speak normally. Thank you for your gifts that allow us to change the lives of little ones like Dulce and her family. 

Dulce after her successful surgeries
Dulce after her successful surgeries

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Darwin at 9 months, after both surgeries
Darwin at 9 months, after both surgeries

Darwin was born on June 26, 2014 in his village of Pamoca in the rural Guatemalan highlands. As is typical in this region of Guatemala, his birth was attended by a midwife, who immediately recognized his cleft lip and palate.

Darwin’s father, Fabian, and his mother, Maria, were very upset. Darwin’s oldest brother, Marvin, had also been born with cleft lip and palate. Then as now, they had very little money. Because Partner for Surgery did not yet exist to serve families like theirs, Marvin’s surgeries had not been completed until he was 13. As a baby, he had tremendous difficulty getting enough to eat. When the time came, he couldn’t speak normally. Additionally, to protect him from teasing, Fabian and Maria rarely let him leave the family home. Marvin’s life was difficult and lonely.

Darwin’s parents didn’t want Darwin to have to endure the difficulties Marvin had. But there was a glimmer of hope: in recent years they had heard about Partner for Surgery and hoped that Darwin could be helped while he was still young.

They learned of Gabriel, a Health Promoter who had helped others in their village. Gabriel visited their home, evaluated Darwin, and enrolled him in the Nutrition Program so he could receive robust nutrition and proper care in preparation for surgery.

After several months of nutrition supplements and monitoring by Gabriel, Darwin received his cleft lip surgery in October of 2014, and received his cleft palate surgery in January of 2014. Darwin will speak and eat normally, and will not be hidden away in the family home as his brother was.

Fabian and Maria see Partner for Surgery as a light that came into their lives, a blessing to their family. They are very grateful that Darwin will have a happy, healthy life.

Darwin shortly after birth
Darwin shortly after birth
Darwin at 6 months, after his first surgery
Darwin at 6 months, after his first surgery
Darwin has a great smile!
Darwin has a great smile!
Leonel at birth
Leonel at birth

Partner for Surgery's Infant Nutrition Program for infants born with a cleft lip and palate has been in place for just over five years. Because our program locates infants at birth or very soon thereafter, mothers receive lactation coaching, breast pumps and nutritional guidance while they can still produce milk. For mothers unable to nurse, commercial formula is provided. The story below of Leonel is a wonderful example of a life that was saved in the early days of the program, and an example of how this child can now be of help to the family and live a normal life.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Leonel was born in 2009 with cleft lip and palate to Roselia and Baten, both first time parents at age 17. They were confused and scared and did not know what to do about their son’s condition. All they knew was that they had no money to pay for treatment. Fortunately, the midwife who attended Leonel’s birth knew about Partner for Surgery through the local Health Center. A health promoter was assigned to Leonel and his family to support their journey, beginning with enrollment in the nutrition program.

Leonel did so well in the nutrition program that he was healthy enough to undergo surgery to repair his cleft lip at 5 months. At 18 months, he was ready for cleft palate surgery.

And look at him today at age 5! Thanks to early intervention by Partner for Surgery, he is healthy, strong and quite handsome! He takes great pride in working with his grandfather in the fields, so he can help feed the family. 

Leonel’s mother Roselia is very grateful to Partner for Surgery for saving her son’s life and helping her when she so desperately needed it. “Thank you for your help!”

Leonel at age 1
Leonel at age 1
Leonel at age 2
Leonel at age 2
Leonel at age 5
Leonel at age 5
 

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Organization Information

Partner for Surgery

Location: McLean, VA - USA
Website: http:/​/​www.partnerforsurgery.org
Project Leader:
Frank Peterson
Partner for Surgery
McLean, VA United States
$13,005 raised of $40,000 goal
 
140 donations
$26,995 to go
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