South Florida Sun-Sentinel Palm Beach (Sunday)
Losing a race against time
Children waiting for transplants are victims of crises in Venezuela
By Regina Garcia Cano and Juan Pablo Arraez
Velutini, a member of the organization’s board of directors. The service interruption became permanent.
The country now lacks a program to harvest organs from dead people, which was overseen by the organization.
Even some charitable options have been lost. For years, the Houston-based Simon Bolivar Foundation, a charity funded by Citgo, a subsidiary of Venezuela’s state-run oil giant PDVSA, covered the costs of transplants for Venezuelan children in other countries. But the foundation stopped paying the bills in 2019 after the U.S. imposed economic sanctions blocking companies from dealing with PDVSA.
The sanctions make it very difficult for Maduro’s government to access overseas assets and earnings, including those from Citgo. Maduro has blamed them for a wide range of issues afflicting Venezuelans. But the sanctions do not prohibit transactions involving food and medicines “intended to be used to relieve human suffering,” according to the U.S. Department of Treasury.
Many of the children waiting for a transplant, including Zoe, receive care at a hospital in the capital city of Caracas. The organization their parents created to push the government into action, Santi y sus Amigos, estimates that more than 100 children have died since 2017.
Children like 9-year-old Jeannys Herrera, who died three months ago after about two years of waiting for a kidney transplant. Her mother, Gineth Gil, periodically visits her grave at a municipal cemetery in Caracas, sweeping it with a makeshift broom and playing music for her child.
“Just as my daughter died with hope, there are other children who are still alive and want hope, want to have a quality of life, (want) to be transplanted,” Gil said.
In September, Santi y sus Amigos proposed equipping an abandoned area of a hospital to exclusively provide bone marrow transplants — a move it estimated could save at least 60 lives in less than a year.
The group also suggested that the government enter into agreements with private Venezuelan hospitals that have the capacity to carry out pediatric transplants.
“We see how day by day, the children’s health is deteriorating without much hope,” they wrote.
Cardenas said costs can range between $70,000 and $100,000 for a transplant. That’s a daunting price tag in a country where the average minimum monthly wage is about $2.
Parents also placed pairs of shoes — each with the date of death of the child who once wore them — outside the Mexican embassy in an effort to draw attention to their plight as discussions between the government and opposition kicked off in Mexico City.
But the negotiations, intended to find a way out of the yearslong stalemate that has afflicted Venezuela, were suspended last month.
The Venezuelan government did not respond to requests for comment.
Maduro during a recent televised event announced a plan to resume bone marrow transplants.
“Now, we are going to advance in a plan to accelerate transplants for those who are waiting for their operation,” Maduro said. “We are going to fully guarantee it with all the treatments, with all the loving care and overcoming difficulties, sanctions, blockade.”
With a long wait, a child’s need for a transplant can be overwhelming for the entire family.
Velazquez works as an in-home hairdresser, taking appointments only when Zoe is not at the hospital. But Marcos Brito did not have a work-from-home option. He quit his job as a publicschool teacher in 2016 after his son was diagnosed with steroid-resistant nephrotic syndrome, a rare condition, and was told a kidney transplant would be needed.
Maykol Brito’s illness typically progresses to end-stage kidney failure, but transplants can help achieve remission. Since his diagnosis, he has spent months at a time at a Caracas hospital, to the point his father calls it their home.
At 13, he is better able to understand the consequences of delaying transplant than younger patients. His father sometimes covers his ears when a nearby patient is having a medical crisis.
“What are they waiting for? That all the children go to heaven?” Maykol said, after logging in a notebook all medications he had just taken. “It is important that transplants are reactivated for everyone.”
His father said lab work for each kidney disease patient costs $20 a month. His partner chips in to help pay the $300 a month it costs to buy food for Maykol’s low-carb diet.
Marcos Brito is part of the parents’ group, which he said is waging “a humanitarian campaign” aimed at convincing authorities to “make the right decision in this matter because we no longer want to lose more babies, more children.”
Dr. Pedro Rivas Vetencourt, who headed the National Transplant Organization before the government takeover, co-leads a foundation working to expand access to pediatric liver transplants across Latin America. He said governments often fail to allocate money for transplants because of the expense.
But he said research has shown that a transplant is more cost effective than long-term treatment.
If a child has been in and out of a hospital since she was born, Vetencourt said, that “means her mother has a lot of limitations to work because you have to take care of the child.”
“So, the child cannot go to school like she’s supposed to when you’re 9 years old, (and) the child is falling out of place. It affects a very vulnerable population, and then increases the chances of them living in poverty. What we try to do is explain to the governments that they can do a better use of resources.”
Three times a week, 14-year-old Angel Cespedes and his mother make a roughly 45-mile journey by bus to Caracas. A bandaged catheter protrudes from his neck, a port for the dialysis that removes waste and extra fluid from his blood.
Yohelys Cespedes knows her son’s pain. She, too, has end-stage kidney failure, undergoes dialysis and needs a transplant.
Angel has relied on dialysis since he was diagnosed with chronic kidney disease in 2017. The hourslong treatments and catheter infections have weakened him. He has lost weight and is susceptible to fevers; without transplants, his mother fears for his future, and for her own.
“I don’t know whose fault it is,” Cespedes said after she and Angel underwent dialysis on the same day. “This is not the time to look for someone to blame, whoever has the solution that is what we want.”