Transplant-waiting children victims of Venezuela’s crises

Zoe Martano is no stranger to misery. At 6, she has spent half of her life in and out of a Venezuelan hospital, being prodded and poked, rushed to the ICU and hooked up to IV lines meant to keep her alive until her country’s crises dissipate.

Only then might the young leukemia victim be able to undergo the bone marrow transplant doctors say she desperately needs.

Except for a few charity-aided cases, poor Venezuelan children have not received organ or bone marrow transplants since 2017. Dozens of children have died since, including 25 this year, according to a parent organization. Only the wealthy in this socialist country can get a transplant.

For Andrea Velázquez, Zoe’s mom, the lives of her daughter and the other roughly 150 children awaiting transplants are in the hands of the government of President Nicolás Maduro.

“It is very difficult to explain to a mother who lost her son that ‘Look, we don’t have the resources to make the hospital optimal to do a transplant,’” Velázquez said.

“If the resources were better managed, obviously, we would have better hospitals and we would not be going through what we are going through.”

The troubled South American country once had a successful transplant program. Between 1967 and 2000, more than 3,100 kidney procedures alone took place. By 2016, that number would more than double thanks to a public-private partnership that included public awareness campaigns, an organ procurement system and assistance for low-income patients.

The National Transplant Organization of Venezuela, which was privately administered and publicly funded, served minors and adults in need of a variety of organs, including heart, liver and kidneys. But after Maduro took office following the death of President Hugo Chavez in 2013, the government demanded full control of the program.

In June 2017, health officials told the country’s 14 transplant centers that they would be closed for three months to resolve medication-related issues, according to Lucila Cárdenas de 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.

Many of the children waiting for a transplant, including Zoe, receive care at a hospital in the capital 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 hand 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.

Cárdenas 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 years-long stalemate that has afflicted Venezuela — were suspended last month.

The Venezuelan government did not respond to requests for comment.

Maduro during a televised event Tuesday 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 public-school 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 Ángel Céspedes and his mother make a roughly 45-mile journey by bus from a rural community to Caracas. A bandaged catheter protrudes from his neck, a port for the dialysis that removes waste products and extra fluid from his blood.

Yohelys Céspedes knows her son’s pain all too well. She, too, has end-stage kidney failure, undergoes dialysis and needs a transplant.

Ángel has relied on dialysis since he was diagnosed with chronic kidney disease in 2017. The hours-long 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,” Céspedes said after she and Ángel 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.”