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Dying while waiting for a kidney: the limbo of Venezuelan children who need a transplant | International

Jeannys heard that Winder was unemployed. They were in the same room, both with the complications that children who survive thanks to – and despite – hemodialysis have; the heart a thousand, full of liquid and bleeding. On June 19, Jeannys celebrated her nine years in hospital. The kidneys that she had cared for for five years as a renal patient finally collapsed, without achieving a transplant in time, announcing a new life connected to one of the machines of the nephrology service of the Hospital de Niños JM de los Ríos, in Caracas, the only one for pediatric patients in Venezuela. “She listened when the doctors said that Winder (Rangel, 11 years old) had gone into unemployment and his heart was racing and he began to struggle to breathe. They were friends, he always teased her that she was his girlfriend ”, says his mother, Gineth Gil, from her home in a Petare neighborhood. In her daughter’s room there is a collection of stuffed animals, the still inflated nine-year-old balloon, and the empty bed.

Jineth sees her daughter Jeanny’s bed. He was 9 years old when he died on August 11, 2021.Gaby Oráa

Jeannys died on August 11, a day after Winder. Hers is the twelfth death of a child from this hospital awaiting a kidney transplant in 2021 that is not over yet. After her, two more died between August and September. Seeing their dialysis partners die recurrently is one of the hardest blows for children and adolescents with chronic kidney disease in Venezuela. And the mothers live a collective mourning. When they talk about their living children, they repeat by heart the names and dates of the deaths of all dialysis partners who have died in the last year.

That week, Jeannys and 12 other children on dialysis at the hospital hadn’t just grieved Winder. On August 3, Niurka Camacho went – asleep – after seven years on dialysis, a few days after her 15 years, which she celebrated with a blue princess dress and after denouncing the crisis that kidney patients are experiencing in Venezuela in a virtual audience before the Inter-American Commission on Human Rights (IACHR). “I have seen many colleagues pass away while waiting for a transplant. It is difficult for me because I do not want the same to happen to me and that is why I ask that the transplants be reactivated. Please do something, I want a better quality of life, “said the teenager on June 30.

Niurka was speaking from a computer in the offices of Prepare Family, an NGO that has fought for more than a decade for the right to health of the patients of the José Manuel de los Ríos Hospital, subjected to the rigors of their illnesses and victims of a precarious health system. In that fight, he has obtained precautionary measures from the IACHR for the children of the hospital that the Venezuelan Government ignores. “We have seen several times how the children of the hospital die like popcorn,” says Katherine Martínez, president of the organization. “The State has failed to fulfill its duty to guarantee the right to health and life. There are too many breaches. That is why we are fighting to reactivate transplants in safe conditions and to compensate families ”.

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Between 2000 and 2014, 4,170 transplants were performed from deceased donors in Venezuela, of which 2,257 were kidney transplants. During that time, the National Transplant Organization of Venezuela (ONTV), a private foundation, promoted the organ and tissue management system in hospitals in the country. But in 2014, the Ministry of Health took control of this program through a state foundation and assumed the powers that the ONTV had. The balance was tragic. Since then, they have only performed 130 kidney transplants with this type of donor and on June 1, 2017, the new Fundavene totally paralyzed all transplants due to a shortage of immunosuppressants, necessary to prevent organ rejection, and due to the hospital crisis, which Four years later, it has worsened due to the lack of supplies and the exodus of qualified personnel, given the losses caused by the intense migration of Venezuelans fleeing poverty.

Four years ago, the waiting lists turned into limbo. In that period, 63 children who were waiting for a transplant in JM de los Ríos have died and the ONTV estimates that at least 960 people are waiting to be transplanted, of which 150 are children and adolescents. There are also children with cancer waiting for a bone marrow transplant. According to Prepara Familia, 25 depend on them in the children’s hospital, of which 15 need it urgently. This procedure, in the case of having a compatible or autologous marrow donor (which is extracted from the patient himself), is only done in a private center in Venezuela, an unattainable cost for most families in a country with more than 90 % of the population in poverty. Only one public hospital in the central region of Venezuela performed it, but since 2013 none has, according to an NGO report presented earlier this month.

An agreement between a foundation of the PDVSA oil company and Italian and Spanish hospitals allowed between 2007 and 2016 the transfer of Venezuelan patients to receive bone marrow transplantation in Europe. With the drop in oil production and revenues, the program came to a halt, leaving a debt of more than 11 million euros. The Government attributes the suspension to international sanctions and the taking of assets of the oil company abroad by the president of the National Assembly, Juan Guaidó, but the families say that the decline of the program began in 2015.

In 2017, Judith Bront had to bury her only son, 12-year-old Samuel. Kidney patient since birth, did not survive an infectious outbreak resulting from contamination of equipment in the hemodialysis unit of the children’s hospital, which also killed others. Now, the mother is an activist in Prepara Familia. “Of those who were on dialysis with Samuel, today only two children remain alive,” he recalls with sadness nailed to his face. “Before, patients could endure many years on dialysis, but now we see that they die within two or three years of dialysis. They don’t have a chance. “

Prepara Familia volunteer Judith Bront orders the embroidered names of deceased children awaiting transplants.Gaby Oráa

Kidney transplantation is the most widely used therapeutic modality as a replacement treatment, especially in children with end-stage chronic kidney disease. Dialysis shouldn’t be the only option, much less one without guarantees. After Niurka’s participation in the IACHR, the Venezuelan government began recruiting patients to undergo tests for a possible reactivation of transplants, something that remains uncertain. Some family organizations took the request to restart the surgeries to the negotiations between the ruling party and the opposition in Mexico, but that dialogue today is stalled. For the president of Prepara Familia, she is playing with the hope of the people.

Safe kidney

Last Wednesday, Angel’s body was shaking. 14 years old, four years on dialysis and 30 kilos of “dry weight”; that is to say, without counting the liquid that must be removed from the body one day or another. He was unable to complete his three-hour cycle to remove toxins from his blood that his kidneys do not process. He was disconnected earlier and huddled with his chills and pains on a street sidewalk outside the health center. He hoped his mother, also a kidney patient for nine years, would finish her session.

Yohelys Céspedes and her son Ángel travel two hours from Valles del Tuy to Caracas to attend hemodialysis three times a week. That day they had to make an emergency stop at the hospital to assess Ángel’s discomfort, which passed a few hours later, when he was able to say, jokingly and with a smile hidden in the mask: “I’m already on the line.” Yohelys says that Ángel, the oldest of his three children, has cried little for his illness “because he is a warrior.” “Some time ago, when he saw that his younger brother, 12 years old, is much older than him, he cried a lot,” he says on the way to the hospital.

Yohelys Céspedes with her son Angel before admitting him to the hospital. Gaby Oráa

In addition to toxins, the machines remove calcium and minerals, which must be compensated with drugs, and generate wear and tear that includes cardiac, metabolic and bone complications. The boy, who has not gone back to school since he went on dialysis, is listed on the new waiting list for a possible reactivation. “I don’t know if my son can be a candidate because he is already very deteriorated. But if you are not going to receive it, I demand that we at least have quality of life, that we can have all the medicines for decalcification and a balanced diet ”. Yohelys, barely 32 years old, survives with what her parents who emigrated to Colombia send. He says his dream is to go to Spain to have them transplanted. “People’s life changes,” he says.

Kidney patients have recently denounced the lack of bicarbonate and other necessary solutions for treatment, medications, obsolete and maintenance-free equipment and services associated with their pathologies that do not work. The lack of water for dialysis is a frequent complaint from families. The night Jeannys got worse she needed an early morning hemodialysis and there was no water in the hospital. Had to wait for morning.

There are also not enough rooms, so dialysis times that should be four hours for each patient are shortened on some occasions, when the machines break down. “When a patient dies, a burden and a lot of sadness are felt in the air, but the space is immediately assigned to another who is waiting,” says 16-year-old Luis Méndez, who has become an activist for the rights of nephrology patients. “It is not fair that we have to live without hope, that I have to give time from my dialysis to another colleague who also needs a full session,” says the young man, who had to move with his family from Güiria, in the eastern end of Venezuela, to be able to treat his illness in Caracas. Together with Ángel, he is on the new waiting list, with few expectations. He recognizes that his body wears out with the days and the possibilities are reduced. “If I get a transplant, I will still have to leave the country because here I will not be able to keep my new kidney safe.”

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