Children’s Heart Surgery Program
A cross-section of 12 patients served by the Children’s Heart Surgery Program between 2008 and 2014 was chosen for follow-up via home visits and interviews in the months of August-September 2015. Following are the summaries of the current situations of these patients, including six from Cochabamba and six from Santa Cruz.
Ana María Camacho Laime
Surgery date: June 2008
Age operated: 4 years
Current age: 11 years
Diagnosis: Atrial Septal Defect (ASD)
Ana Maria is the youngest of two sisters. Her father drives a taxi and her mother cares for the children.
Since her surgery, Ana Maria has had no further health problems, and has transformed from sluggish and sleepy into an active child.
Her mother reports that Ana Maria has grown considerably in both weight and height since the operation. She is currently in 6th grade and is a good student, participating without restrictions in school sports and cultural activities. Her development has been normal, and she gets along well with her classmates. Her circle of friends expanded notably after her surgery, which her mother attributes to her ability to play without problems.
At the end of the home visit, Ana Maria expressed to the social worker: “Gracias por ayudarme” – Thank you for helping me. Her parents were especially emotional, thanking “God and all the people who made possible our daughter’s surgery.”
Surgery date: March 2010
Age operated: 5 months
Current age: 6 years
Diagnosis: Complex congenital cardiomyopathy requiring emergency surgery
Pablo is the youngest of two brothers. Neither of his parents has a steady income; his father is a painter and his mother is a domestic worker.
Pablo’s congenital malformations were particularly complex, but his mother María Elena recalls that Pablo’s breathing improved immediately after the surgery, and his hands and feet were no longer blue in color. He has had no further health problems related to his heart, and lives “a normal life, like any boy his age.” He currently attends school, participating in all activities. He is an active boy who likes to play soccer and other games with his classmates, and he is friends with many boys and girls his age.
María Elena expressed the following to the social worker: “I am very grateful for the help we were given. At that time, I didn’t have money even for household expenses. Thank God there are good-hearted people.”
Nilma Veizaga Alcocer
Surgery date: May 2012
Age operated: 4 years
Current age: 7 years
Nilma is the oldest of two. Prior to surgery, she was underweight and small for her age, and tired very quickly. Since her surgery she has caught up in size to other children her age, and she no longer suffers debilitating fatigue. She is in first grade and gets good grades in all her classes, including physical education. She carries out all the same activities as other girls her age. Nilma is an especially social child who likes to play with her classmates and especially with her younger brother.
Her mother shared the following: “I am very grateful for the help you have given me so that my little daughter could have her surgery. I didn’t know what to do when I saw her so ill. I hope the help you provide continues.”
José Carlos Rivera Chincaya
Surgery date: December 2012
Age operated: 14 years
Current age: 16 years
José Carlos comes from a family of six. His father picks up odd jobs and his mother cares for the family. José Carlos does not attend school in order to work to contribute to the family income. His congenital heart defect was not diagnosed until he was 14, but he has recovered well since surgery, with no related health problems. He has many friends in the neighborhood, and enjoys playing soccer and socializing in general.
At the end of the interview, José Carlos thanked the social worker for helping him, reporting: ”I feel a lot better.” His mother added: “I give thanks for everyone. May God bless you, and I hope you continue to help other children.”
José Edgar Valencia Camacho
Surgery date: May 2013
Age operated: 5 years
Current age: 8 years
Diagnosis: Aortic stenosis , PDA
José Edgar is the youngest of two brothers. Since his surgery, José Edgar has transformed into a strong and very active child, undergoing a significant growth spurt. He is now in second grade, and is a good student, participating in all school activities without restrictions. José Edgar loves sports, and plays on a team at the Club Aurora soccer school.
José Edgar’s mother, María, was very moved to receive the follow-up visit by the social worker. With tears in her eyes, she expressed her gratitude: “It was impossible for our family to gather the money needed [for the surgery]. Please continue to help, especially the children, so they can keep growing.”
David Cerruto Murga
Surgery date: May 2014
Age operated: 8 months
Current age: 2 years
Diagnosis: large VSD
David was left by his parents at the Hogar de Amor orphanage in Cochabamba when he was three months old. Both parents are addicts, with no known address. He was very ill and fragile when he arrived, and a volunteer nurse from the United States provided one-on-one care until he was stable and strong enough for corrective surgery.
David recovered fully from the operation, and is now an active toddler with a healthy weight and height for his age. He still lives at the Hogar under the care of Sister Ana Medina, who expressed the following: “This help … is a blessing from God, especially for children like David who were abandoned. I hope there are more people who want to contribute.”
Rosa Isela Sanabria
Surgery date: May 2009
Age operated: 3 years
Current age: 9 years
Rosa Isela is the youngest of three daughters of René, a day laborer, and Margarita, who sells vegetables in a local market. When not in school, Rosa helps in her mother’s stand.
The family was living in Cochabamba when Rosa was born. They were told that a lower altitude would be better for her heart condition, so they uprooted the family and moved to Santa Cruz, where they had no family or friends. Their first home was a small room they were allowed to use in exchange for caretaking a home. Once settled there, they started to search for medical care for Rosa. They were eventually referred to Puente de Soldiaridad, which made possible Rosa’s surgery by Dr. Arturo Barrientos.
The family reports that Rosa recovered quickly from her operation. When neighbors commented on her remarkable turnaround, Rosa offered her own explanation: “Dr. Barrientos took out my heart so I’d be healthy.”
Rosa is now in fourth grade at the Colegio Luis Espinal school in Santa Cruz. She has many friends and participates in all the usual school and other activities without restrictions. She has had no further health problems, and is of normal stature and weight for her age.
Six years after Rosa’s surgery, Margarita welcomed the opportunity to talk to the PS social worker: “Thank you for how you have helped me. My daughter is healthy. Thanks to God and to all of you who help the children.”
Rosa Isela added her own message: “Thank you for helping me. That’s why I am alive and healthy.”
Surgery date: August 2010
Age operated: 15 years
Current age: 20 years
Gladys is the youngest of seven siblings. Her mother noticed no signs of illness when she was a child, but beginning around age 13, Gladys began to suffer from back and chest pain, and was no longer able to keep up with her friends or participate in all of her school activities. She began to lose weight and became very sickly. When they finally took her to the doctor, he told them that without surgery, Gladys had only three months to live. As her mother puts it: “That is why we are so grateful. Without your help, Gladys wouldn’t be alive.”
Gladys’ life changed quickly after surgery. For the first time in years, she was able to hang out with friends and participate in all the same activities. She was able to finish the school year and later all of junior high. From there she went on to nursing school. Now Gladys is expecting her first child, a daughter. Her doctors have kept a close eye on her heart throughout her pregnancy, but they have told her she is healthy and they anticipate no problems during the birth.
Gladys shared her reflections: “The doctors explained to me everything about my surgery scar. It has not affected my life, and for me is a symbol of the fact that I can move forward. I was going to die without the surgery; I had only three months to live. Now, four years have gone by and I am still alive. I want to thank you and ask you to continue to help children who need you. Without your help, I don’t know what would have been of me. Now I am going to give life to my daughter. Thank you. … Thanks to God and to Puente de Solidaridad, I have continued without any complications of any kind.”
Surgery date: September 2011
Age operated: 16 months
Current age: 5 years
Daniel comes from a family of six. When his parents and grandmother recall his infancy and his heart complications, they say it was like a bad dream from which they were finally able to wake up. The doctors had told them that Daniel had little time left to live without surgery. His parents were young and had no money. Daniel’s grandmother recalls that her son, Daniel’s father, was frantic over the possibility of losing his only boy. She now lovingly refers to her rambunctious grandson as “mischievous.”
Daniel was a 20-pound toddler at the time of surgery. Although he has recovered well, he is still small for his age at just over 35 pounds. His pediatrician says that his small stature is most likely genetic, since his parents are small. Nevertheless, she has referred Daniel for nutritional support to make sure he eats a well-balanced diet and reaches his full potential.
Daniel is currently in kindergarten and is able to keep up with his classmates both in school and on the playground. He even dances in the school’s civic activities.
His mother reports: “We are very grateful for the help of Puente de Solidaridad. Without it, little Daniel would no longer be with us. We hope you continue your work to help more children who may not have financial means.”
Surgery date: February 2012
Ages operated: 7 months and 14 months
Current age: 4 years
Diagnosis: Tetralogy of fallot
Leonardo’s parents took him to the doctor when he was two months because he appeared to suffocate while eating, leading his hands and feet to turn blue. It was then that they were told their son had Down Syndrome, accompanied by a complex set of heart defects.
Leonardo’s condition improved after his first surgery at seven months of age. His skin color went from blue to pink, and he no longer struggled to breathe and eat. His particular cardiomyopathy required a second surgery seven months later, after which his health improved even more. His growth rate picked up speed, as well as his overall development. He was referred for a full year of physical therapy, where they helped teach him to walk. As his parents note: “Now, nobody can stop him!”
Leonardo’s family invests great efforts to provide him the special care he needs as a child with Down Syndrome, while being careful to not overprotect him. Leonardo is especially fortunate to have two older brothers who help entertain and care for him.
Daniel currently attends an “early start” center, and will soon be enrolled in a nearby preschool.
His mother recalls the stressful early days: “Now as a mother, I remember it was very difficult for us. When our son was born, we didn’t know he had Down Syndrome. We didn’t find out until he was two months old. But we clung to hope that he was going to be OK. For that reason, I’m asking you to continue to help children who have nowhere else to go. ... I ask you with all my heart to never tire of helping, because our children are angels from God.“
Surgery date: January 2014
Age operated: 1 year 7 months
Current age: 3 years
Daniela is the youngest of three siblings. Her father herds cattle on a ranch in the town of San Julian. The village doctor told her parents she would never walk, and that her head would continue to grow but she was going to die. It was a very frightening time, but Daniela’s parents saw their daughter fighting to live and decided they would do what they could to help her. The owner of the ranch where the family lives and where Daniela’s father works helped them procure surgery for Daniela, for which they are very grateful.
Daniela’s parents report that she appeared to be “born again” after the surgery. Daniela is now a healthy child who plays with her older siblings like any other child. She is an especially happy little girl, who shows no outward signs of having been so ill. Before her surgery, feedings were always difficult for Daniela, who seemed to reject all food. She weighed just 17 pounds at the time of the operation, but now has a strong appetite and has gained 11 pounds just in the past year. According to her parents, “now she could eat all day!”
Daniela’s parents were very grateful to see the Puente de Solidaridad social worker again, and to share the following: ”We thank you with all our hearts for helping people like us who need it. Keep moving forward and continue to help children, because many children have these problems. When we look at our healthy daughter now so full of life, we have no regrets. It was all worth it – all of our suffering is over. … With your help, many more children can lead normal lives.”
Surgery date: October 2014
Age operated: 9 months
Current age: 1 year 9 months
Cielo is the youngest of ten children. Her parents support the family by hauling various products from the countryside and selling them informally in the streets of Santa Cruz. When the Puente de Solidaridad social worker arrived for the follow-up interview, Cielo was in the care of her oldest sister, Clady, while their parents were purchasing product in the town of Oruro.
As the youngest, Cielo appears to garner the most attention in the family, and is evidently well loved and cared for by her older siblings. She appears to spend most of her time playing with her youngest siblings, among whom she manages to impose herself with her very strong character.
Cladys informed the social worker that, since her surgery, Cielo has not suffered any more of the fevers that used to plague her, and she now breathes normally. Under her pediatrician’s orders, for the past two months the family has taken Cielo every day to a Nutrition Center where she is fed balanced meals and where the family is instructed on how to better feed the entire family. Since her surgery, Cielo has grown from 11 to 20 pounds.
Cielo also attends daily physical therapy at the Hospital Francés. Once she reaches a proper weight for her age and size, she will be referred to an early start program for further developmental stimulation.
Clady shared her thoughts, on behalf of the family: “As her sister, I am very grateful for all you have helped us. Not only for my little sister but also for my father who had surgery for a tumor through Puente de Solidaridad. We went through difficult times for two years, first with my father and then when my little sister was born with the heart problem. But God is great and once again you were able to help us. Without your help, we might not have a father, or a sister. For that, we are grateful.”