CARACAS, Venezuela — Ani Camacho has watched her 5-year-old son, Zabdiel, battle cancer for years.
The despair briefly turned to hope when she learned last December that Zabdiel was going to get a potentially life-saving bone marrow transplant in Italy, a complex medical procedure he could not receive in Venezuela.
“We were super happy,” Camacho said. All the family had left to do was buy plane tickets and get visas, she said.
But she and Zabdiel never left Venezuela because the program that would have allowed him to travel became enmeshed in the country’s economic chaos and was put on hold. They remain in Caracas, traveling back and forth between an apartment lent by a family member and J.M. de los Ríos Children’s Hospital, where Zabdiel has spent much of his life and made most of his friends.
“It’s so much anguish, desperation, impotence,” Camacho, 40, said as she waited for her husband to bring her son home from the hospital, where the boy was getting a spinal tap.
“We are out of options,” she said.
With Venezuela in the grip of a severe economic crisis spanning several years, children like Zabdiel have been caught in the center as the humanitarian toll worsens, with no immediate end in sight.
Aid workers and doctors told NBC News the boy’s struggle for medical care was emblematic of a broader crisis that was causing a generational toll as children continue to languish at key points in their mental and physical development.
Janeth Márquez, director of the Catholic aid organization Cáritas in Venezuela, said the three biggest problems facing Venezuela’s children are an inability to get medical care or supplies, malnutrition and the effect of families being separated as parents leave the country to find work to be able to send money back home.
About a third of the country’s children need help accessing “basic nutrition, health and education services,” UNICEF said in June. The United Nations agency also said that mortality of children under 5 had increased by more than half from 2014 to 2017.
Zabdiel is among dozens of children at the hospital in need of bone marrow transplants. Hundreds of children and young people received the transplants and aftercare treatment in Italy under a 2010 agreement that was financed by Venezuela’s state-run oil company.
But that program has been suspended.
Four children whose families were also hoping for transplants died at the hospital in May. Another child on the list has died since then, according to advocates.
Venezuela’s government claims U.S. sanctions have frozen funds that could have paid for the expensive medical treatments, while critics of President Nicolás Maduro say it is another example that Venezuela’s medical system is in turmoil amid mismanagement and corruption.
Camacho said the children have been caught in the middle, with their lives at stake.
“They are the most affected by this situation,” she said. ”My son doesn’t know anything about this, but he is in a fight and a war.”
‘We would collapse’
On a Wednesday in June, a line of people, mostly women holding babies and young children, stretched out the door of the emergency medical clinic that Cáritas runs for families in need. Some were there to see an on-site pediatrician, others because they were sick and needed treatment or medications they could not otherwise afford.
Márquez said there has been a sharp increase in people needing their services since 2014, when only about 10 people would come to their main offices. Now, hundreds of people come every day, including an influx of middle-class people seeking medicine they can no longer afford or that is not available otherwise.
Auribel Plazuela, 31, arrived at the clinic that morning for a follow-up appointment for her 9-month-old daughter and to receive asthma treatment for herself.
Plazuela said that about two months earlier, her baby appeared weak and was “coughing and coughing,” so she brought her to the clinic, where she was given medication along with a treatment plan.
“I completed the treatment and, thank God, the baby hasn’t suffered any more,” she said, as other children cried while being seen by a pediatrician.
At the same time, a little girl in a pink and white top and shorts was given an injection to treat nausea and vomiting.
“It’s truly very difficult. People come here every day that truly need this,” Plazuela said. “In other hospitals, it’s very difficult because you have to pay, and with the situation the way it is now you can’t.”
Plazuela said she has asthma and had been having trouble breathing for the last three days, so she came to Cáritas and waited to receive a nebulizer treatment.
She said she brought her daughter in again for a check-up, and the doctor found her to be in good health.
Plazuela said she knew other parents of children with special needs, such as epilepsy, who went to the clinic because they needed “very expensive” medication.
Without the services the clinic provides, “we would collapse,” she said.
“All of us Venezuelans are going through the same thing,” she said. “You buy one thing or the other. I buy food, or I buy medicine, and in the end, I need both.”
‘This crisis is taking children’
The government’s data from 2016 shows that maternal mortality shot up 65 percent in one year. Infant mortality rose by 30 percent — to more than 11,000 babies under the age of 1 dying in that single year.
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Márquez said her organization works with communities who have faced an “onslaught by the crisis” in Venezuela and has seen the toll it has on families.
“Sadly, we are seeing how this crisis is taking children,” she said.
“If the crisis continues, we are looking at a dark horizon for people who do not have money, for the most vulnerable,” she said.
Maduro’s critics say his government is to blame for the country’s woes and the escalating collapse of the economy under his presidency through mismanagement and corruption, while Maduro has long claimed harsh U.S. sanctions are ravaging the economy.
In 2018, Venezuela’s inflation rate rose to 130,060 percent, according to the government’s data. In the third quarter of 2018, the country’s GDP shrank 22.5 percent over the prior year.
Maduro, who took power in 2013 as the heir to President Hugo Chávez, remains in office despite opposition leader Juan Guaidó’s call for mass demonstrations and a military uprising at the end of April. But mass defections never materialized, and much of the military has remained loyal to Maduro. Guaidó declared himself Venezuela’s interim president in late January after Maduro’s disputed re-election last year. More than 50 countries, including the United States, recognize Guaidó as the country’s interim leader.
‘This hurts the children the most’
Dr. Julio Castro, who works at the Central University of Venezuela, said a major contributing factor to health issues in Venezuela was the lack of consistent access to clean, safe drinking water, which has led to outbreaks of diseases, including Hepatitis A. Tap water is not considered safe to drink, and most people who can afford to do so boil the water or buy packaged bottles. Even in Caracas, the capital, some people do not have running water every day, he said, while others store water in tanks that can become breeding grounds for mosquito-borne diseases, or drink from polluted rivers or lakes.
Plazuela said that while she has a water tank, sometimes the water comes out yellow or dirty so she “always” boils the water for herself and her four children.
Márquez said Cáritas’ latest study found that 35 percent of children were suffering from chronic malnutrition, living with nutritional deficiencies for at least five years. In 2017, that number was 27 percent, according to Cáritas.
In a statement to United Nations human rights chief Michelle Bachelet, Cáritas highlighted several critical issues, including delays in growth because of chronic malnutrition.
The charity said it had evaluated more than 30,000 children in the last three years and found that 6 out of 10 families interviewed are begging and searching for food in garbage dumps. Four in 10 have had to sell belongings to afford food, and another four in 10 have had to separate as a family to continue surviving, Cáritas said.
The United Nations said in June that more than 4 million migrants and refugees have left Venezuela in the last few years. The pace of migration has “skyrocketed” since the end of 2015, the U.N. said, with the number increasing by a million in seven months, from last November to June.
“Globally, Venezuelans are one of the single largest population groups displaced from their country,” the International Organization for Migration and U.N. Refugee Agency said in a statement.
Márquez said that Cáritas’ “great concern is that emigration continues to increase this year, which totally destroys the family, destroying homes.”
“We say we have mothers who don’t have children and children who don’t have mothers,” she said.
Cáritas runs a weekly soup kitchen, which drew a hundred people on a recent day. A priest led the group in prayer and volunteers passed out bread and bowls of soup containing beef, potatoes, corn, carrots, onions and lentils. Workers said it was the only time many of the families ate protein during the week.
Ana Rojo had some soup while holding her 1-year-old son at a table surrounded by other family members. As a mother of 12 children, Rojo said the soup kitchen was essential for her family.
Many Venezuelans, including Rojo’s family, rely on a government subsidized food aid program, but the aid only lasts her family a few days, she said.
Rojo said sometimes she would “just start to cry” because she would have to send her kids to bed hungry.
“You send them to bed with just a glass of water, and that’s not fair to them,” she said.
Rojo said her 5-year-old son sometimes “faints and turns purple, he starts to vomit” because he hasn’t eaten.
“This hurts the children the most,” she said. “Because you’re an adult and you endure, but they don’t.”
‘The situation is getting worse every day’
Dr. Castro said the country’s continuing hyperinflation has worsened health issues for families.
“It’s impossible for them to afford medicine for any diseases,” he said.
Hospitals throughout the country also do not have the medicine they need or water on an everyday basis. Some have problems with electricity, he said.
“My concern is that the situation is getting worse every day,” Castro said.
Rosa Colina, whose daughter Cristina, 18, is also in need of a bone marrow transplant, described being in hospitals lacking medicine. Sometimes when medication was available, she had to pay for it out of pocket — expenses she cannot afford. Cristina suffers from a blood disorder called thalassemia major, and developed hepatitis C after a blood transfusion in 2016.
Colina said she has had to go out in the street and beg for money in the hope of being able to afford medication.
The hospitalizations and increasing health complications have taken over Cristina’s daily life. A year ago, she required a wheelchair, following the development of a blood clot, and while she has since regained some mobility, her parents need to physically help her get around.
“Before 2016, Cristina was a model, but not anymore, she used to play violin. … She left that, too,” her mom said through tears.
Colina said she hopes a transplant could give Cristina a chance at “a normal life” and to accomplish the goals she has held for so much of her young life.
Some 500 bone marrow transplants for adults and children have been done in the country at a hospital in Caracas and at another in the city of Valencia since 2000, said Dr. Francisco Ramírez, director of the bone marrow transplant program at the Hospital of Clinics Caracas. But in the last two years, the number of transplants has decreased from about 25 a year to nine last year and three so far this year, he said.
“This is mainly due to the difficulty in getting medications, of getting what corresponds to the costs,” he said.
Beyond the limited resources, children like Zabdiel, who do not have a matching donor in Venezuela, have had to look internationally for potential matches and transplant treatments, as Venezuela currently does not have the methodology or ability to take bone marrow matches from international sources and bring them to Venezuela to treat the children, he said.
The country and aid organizations are looking into other ways to give transplants to children like Zabdiel, but limited resources are again a major issue, he said.
Maduro’s government has said “coercive measures” by the U.S. government in the form of sanctions have prevented the state-run oil company PDVSA from transferring money for the transplant treatments. “Venezuela sent the funds through PDVSA, and they were retained in Novo Banco, Portugal, thanks to the sanctions and the criminal blockade,” Venezuelan Foreign Minister Jorge Arreaza said in a statement in April.
“While the U.S. government maintains the PDVSA-Citgo blockade, in Venezuela the lists of citizens who hope to benefit from the social health program grow,” he added, referring to the U.S. subsidiary of PDVSA.
Enrica Giavatto, director of the Association for Bone Marrow Transplant, said since 2006, the organization has brought 487 Venezuelans, most of them women and young people, to Italy. PDVSA had initially been covering the cost of transplants, she said. In June 2018, the group received funding related to the last two months of 2018, but since then they have not received any additional payments, Giavatto said.
She said the association has not been paid costs related to the transplants and after-care treatment for all of 2018 and 2019. The group has continued to provide care for the 19 children and adults who are in Italy receiving treatment as part of the program, she said.
Giavatto said that because Italy’s hospitals are public and because of the high debts owed because of the lack of payment, the association is not able to take more patients, including Zabdiel.
She added that the Venezuelan government did try to make a bank transfer of more than 4 million euros to the association, but that was stopped by Portuguese bank Novo Banco. She said Venezuela asked the group to then open a bank account in Russia to bypass the sanctions. She said the group did, but has not heard an answer.
Novo Banco did not immediately respond to a request for comment.
Katherine Martínez, director of Prepara Familia, a nongovernmental humanitarian organization has been advocating for the families and said the Venezuelan government has the duty to find other sources of funding for the transplants.
“We’re talking about the lives of children that are very much at risk,” she said. “These are families that are doing all they can.”
Back at the apartment in Caracas where Camacho lives, the door opened and Zabdiel arrived home, accompanied by his father, Leonardo Amaya. The boy was dressed in a white button-down shirt and gray corduroy pants, a white bandage around his right wrist.
He played with brightly colored toy cars that he had separated into groups of Autobots and Decepticons, dueling factions from the “Transformers” series.
After a relapse in 2018, Zabdiel is receiving maintenance treatment for acute lymphoblastic leukemia that includes daily medication, chemotherapy and lumbar punctures, his mother said.
Camacho described Zabdiel as a loving and happy child throughout their struggles. Family photos showed the boy dressed as Superman. In one, he wears a Superman T-shirt and cape, a mask covering his mouth with his right hand bandaged. In another, he wears a Superman hoodie, his mouth again covered with a mask, giving a thumbs-up to the camera.
As their wait continues, Camacho said she lives in fear that “my son will die waiting for a transplant.”
“I am afraid that we will have to give up our dreams for our son,” she said.
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