Remember this toddler?
Children of the Americas 2015 Team Members do. Our triage volunteers first met him after he and his mother stood in our intake line for many hours this past January in San Benito, Guatemala. Our pediatrician consulted with his mother when she was called into the clinic room for the much anticipated physical evaluation of her son. The COTA pediatric nurses bonded with Ever and his mother when it was determined that this toddler's problem was beyond our ability to correct on a team and he must be evaluated for our stateside program. While on our pediatric ward we interviewed Ever's mother, taught her about her son's birth malformation and gave her the first-ever colostomy bags she had ever received for her son's open colostomy on his lower abdomen. How many mothers reading this blog post can imagine caring for an active toddler with an open solid waste portal on his abdomen....without any type of containment system?
Children of the Americas leaves every Guatemalan medical team with three of four stateside referrals; children who are beyond the technical scope of our surgical abilities to care for within the confines of working in a Central American hospital. Finding care for these children in United States hospitals that are struggling with caring for our own citizens is an art form that requires dedication, many hours of paperwork and the combined efforts of 4-5 COTA volunteers.
In other words, any child who ends up traveling to the U.S. for donated care wins the "COTA lottery."
Collaboration when attempting to heal the complex medical needs of a Guatemalan child with a birth anomaly is essential and the final details with all of the partners are being worked out for Ever's travel to the states in two months.
As hard as COTA volunteers worked on Ever's behalf, his mother worked harder. She called our volunteer, Bernice, every two weeks as instructed. She prayed, walked to high hills to get cell phone service, traveled 10 hours each way on a chicken bus to get her son's diagnostic studies done and she never lost hope. Here are the conditions under which she parents her sick son:
The
Petén area of Guatemala is hot country. The family lives "en la
montaña", out in the country, in a wooden structure, without
electricity. They cook with firewood; they sleep on the floor.
There is a small wooden structure in the town that they use whenever they need to go to town, but they mainly live in the countryside far from town where they cultivate corn, the basic food crop. When we talked today, all the family was planting corn.
For cash, the father and the older boys look for seasonal work on plantations, not necessarily nearby. When they don't have to work their own land they go to a plantation for weeks at a time. Delmy's father estimates he earns about Q.2000.00 a year. At the
present exchange rate of about Q7.6/$ that would be $ 263.00 per year. Of course, everybody in the family has to do something to help get some cash.
I asked if they wanted to say anything to the people who will be receiving their information. Delmy's father said one word: Agradecimiento (Gratitude).
Several weeks ago Delmy and her father brought Ever to Guatemala City for a required barium enema test. They traveled all night by bus and arrived at 6.a.m. We had helped them with bus fare. When they finished with the test it was around noon. I took them to the bus station to buy a return ticket. Delmy's father said they would take the night bus back, because it was cheaper. I insisted they take an earlier bus rather than sit all those hours in the bus station, since they would have to buy food, etc while waiting. He really didn't want to spend more of COTA's money than necessary. I talked with him about the effort the family would have to make to fulfill the requirements for Ever to get the surgery in the USA, and told him there was still no guarantee they would find the volunteer hospital and surgeon after all their efforts. He simply said: "Whatever it takes to help this child be well and have a better life, we'll do it."
There is a small wooden structure in the town that they use whenever they need to go to town, but they mainly live in the countryside far from town where they cultivate corn, the basic food crop. When we talked today, all the family was planting corn.
For cash, the father and the older boys look for seasonal work on plantations, not necessarily nearby. When they don't have to work their own land they go to a plantation for weeks at a time. Delmy's father estimates he earns about Q.2000.00 a year. At the
present exchange rate of about Q7.6/$ that would be $ 263.00 per year. Of course, everybody in the family has to do something to help get some cash.
I asked if they wanted to say anything to the people who will be receiving their information. Delmy's father said one word: Agradecimiento (Gratitude).
Several weeks ago Delmy and her father brought Ever to Guatemala City for a required barium enema test. They traveled all night by bus and arrived at 6.a.m. We had helped them with bus fare. When they finished with the test it was around noon. I took them to the bus station to buy a return ticket. Delmy's father said they would take the night bus back, because it was cheaper. I insisted they take an earlier bus rather than sit all those hours in the bus station, since they would have to buy food, etc while waiting. He really didn't want to spend more of COTA's money than necessary. I talked with him about the effort the family would have to make to fulfill the requirements for Ever to get the surgery in the USA, and told him there was still no guarantee they would find the volunteer hospital and surgeon after all their efforts. He simply said: "Whatever it takes to help this child be well and have a better life, we'll do it."
Written by Bernice Kita, Guatemalan volunteer
There is more of this story to be shared in the next blog post. Details on the organization who has agreed to gift Ever with donated surgery; his future travel to obtain his care; the adjustments his mother must make as she takes her first plane ride and leaves her family behind so that Ever can get the surgery he needs. It will be their story to tell, and ours to share as we collaborate in bringing the pieces of adventure together for Ever's journey to health.
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