I can not be transplanted: new cases of discrimination against children Sename

                                                                                                    On October 28 of last year, the former director of the National Service for Minors (Sename), Marcela Labraña, testified as a witness for the deaths of children under the tutelage of the agency. The figure of 1,313 minors who were under the care of the State had been a recent and harsh blow.
That day, 11 months before the prosecutor Emilio Emilfork decided to "prioritize the investigation in this case in light of the background," both the Prosecutor and the Sename had full knowledge of the case of Daniela Vargas, the minor of Sename who died after that he was denied a heart transplant because of his precarious social, personal and family condition.
After recalling some cases of children in centers of the aforementioned service, the prosecutor in charge of the interrogation asked Labraña about the situation of James Gaete Tamayo, one of the 18 children who, according to the Sename report, died in the house. National of the Child, and she answered that he remembered it perfectly: "The director of the National House told me that the child was not left as a candidate for transplant. The regional director María José Montero made many arrangements with the Calvo Mackenna Hospital to remain as a candidate, but there was no response. I learned from the regional director that the boy was a candidate for a transplant and had surgery. "
In the same statement, Labraña acknowledged that he asked Javiera Blanco – currently a member of the State Defense Council (CDE) and then Minister of Justice – to contact the "Minister of Health, to visit James in the hospital Calvo Mackenna and raise awareness about the situation of the children who were injured, about the death of the 12-year-old girl from Puerto Montt who was not admitted as a transplant candidate by the Ethics Committee of the Catholic University Hospital due to her precarious condition economic ".
If a boy or girl is in the Sename, he is susceptible to being discriminated against even in the face of public health. It is not about poverty, because 75% of the recipients of transplants come from Fonasa, but of a complete system that closes the door and violates them. And again. In order to specify a transplant, they ask for information from a responsible person, when it is known that they are in charge of the State.
Drug addicted parents
Ana María Tamayo lives in Villa México, in Antofagasta. He and her husband were drug addicts, a fact that was put on the sheets and clinical records of his son James Gaete Tamayo to exhaustion.
In the emergency care bulletin of the Calvo Mackenna Hospital, where it was attended in 2014, it reads: "Anamnesis, social case, National House of the Child, drug-addicted father" (sic).
"Everyone knew that we were drug addicts, as if that were important when dealing with a health problem," says Ana María by telephone, affected because the death of Daniela Vargas has made her relive her own pain: the death of her son James , on June 29 of last year.
Ana María and her son James Gaete, who died on June 29 last year.
As soon as James was born his parents knew that the future would be clinical: problems in the liver led to a first setback. To advance in the recovery of the child, both parents had to leave drugs, a condition imposed by the Family Court of Antofagasta to be intervened for the first time. As they had to act quickly, thanks to a protection appeal, they managed to get James back to Santiago and operated at the Calvo Mackenna Hospital when he was three months old.
The intervention was untimely and did not cause its improvement. The only thing that would make it possible to save the child's life was a liver transplant. Months later, in a lawsuit over the death of the child, his parents would say that James' treating doctor told them that the operation had not worked because "it had been done too late." The parents understood, for the first time, that their condition of drug addicts and the delay of justice had impacted on the improvement of James.
While the child stayed in a home of Sename, on June 7, 2015, he received the liver he needed, but his parents had to endeavor to enlist him. It was not expeditious.
In parallel, Ana Maria and her husband, Jaime, tried to stop drugs, especially to recover all their children: James was in the Sename, but the other three – who today are between 5 and 7 years old – were in custody from Ana María's mother. The parents had convinced themselves that the only way to build the family they dreamed of was to give up drugs. And in that future, of course, there was also James.

Due to the situation that James lived, the period of convalescence and post-transplant controls, added to the fact that Ana María and Jaime did not have authorization from the Family Court of Antofagasta to approach, the Hospital reached an agreement with the Regional Directorate of the Service. National of Minors so that the child was transferred to the National House of the Child.
It was the same Sename who hired the care of an external company, Home Quality Care (HQC), to give the daily care to James. His parents would also count in the complaint – after the death of the child – that every Tuesday James was transferred to his medical check-ups at the hospital with the treating doctor Bessie Hunter. On that same occasion, they also reported that, in mid-June 2016, James presented a new infection "contracted in the National House of the Sename Child, this time by a fungus".
Desperate, says the letter, and alarmed by the rejection of the transplanted liver, Ana Maria and Jaime asked Dr. Hunter about the possibility of a new transplant:
"He was categorical in pointing out that she was not willing to lose another organ in our son, because we did not have the conditions to take care of him. He told us that the best we could do was rush the Family Court of Antofagasta to issue a resolution that will allow us to take James back to Antofagasta with us, "they said in their complaint, where they also left stamped the words they heard from Dr. Hunter: "When we insisted that we wanted a new transplant for James, he replied that 'why do they insist so much if in the end your son will end up being a drug addict just like you'?"
After two weeks in the ICU hospital, on June 29 last year, near 6 in the morning, James died. Three weeks ago he had been three years old.
Search justice
On July 13, 2016, Ana María and Jaime, aided by the Sofini Corporation, tried to pursue those responsible by means of a complaint. The idea was for the Public Prosecutor's Office to initiate an investigation to determine the true cause of James's death, mainly because of what they had heard from the child's caregivers, two nursing techniques and HQC employees. "During the conversations, they told us that the room assigned to James by the Sename did not meet any of the minimum requirements that are expected of a specially enabled and isolated room for an immunosuppressed patient of three years of age … According to them, it is never He practiced the so-called 'terminal toilet' ".
In September of last year, Dr. Hunter made a voluntary statement explaining her bond with the child. There he said that it was strange that an immunosuppressed patient, like other patients he had attended, had had so many hospitalizations for acute symptoms. "It makes me think that where James remained isolated, he maintained a poor isolation technique, since all the infections were due to viral conditions, those that occur by direct infection," the doctor said in her voluntary statement.
The specialist also made clear in that statement that she never treated them badly for being drug addicts or was contemptuous of them or their caregivers, although she did point out that James would never have had a transplant if there had not been an order of the Family Court, because she did not meet the "socio-cultural conditions of her family to give her a treatment and care as high risk as a liver transplant," said the professional. Later on, in his account, he explained this point: "When referring to sociocultural conditions, I do not mean an economic issue, but rather that there should be an adult capable and responsible for caring for a transplant person."
James' parents complain that at all times his son was treated as a "child of drug addicted parents," as if that would diminish the treatment he should receive.
Ana María and her husband have not used drugs for more than a year. However, they were marked. The illness and death of his son James shook their lives, but it also made it clear to the system that it was important to emphasize their status as drug addicted parents. "I was very happy that James was transplanted, but we were discriminated against, we even learned almost at the end that he had rejected the transplanted organ," says the mother.
Rodrigo Paz, a psychiatrist from the Sofini Foundation, helped them to move forward in the crusade. One of the last attempts was a complaint by the "Zamudio Law" because, according to him, the files and the bulletins indicated as if it were an immanent condition of the child that his parents were drug addicts. That's why they filed a lawsuit for the death of James, Lissette Villa and another minor, Alan Peña. "We have never thought that we are going to obtain justice, for a very simple reason: they are deaths in custody, in which those responsible are officials of the same bodies that investigate the deaths of these children." That is why they have taken the information before the Inter-American Commission on Human Rights and want to reach the Court.
Peace makes a crucial point. The Prosecutor's Office has insisted that within its radius of action to investigate only cases are in custody and not those outpatient. "It is one of the points of tension we have had with the prosecutor Emilio Emilfork as plaintiffs in two cases for our corporation, for the deaths of children in Sename, and in another in which we are co-complainants. The prosecutor has insisted that he was appointed to investigate deaths in Sename centers, but if one read with impartiality the resolution issued by the National Prosecutor, on July 12, 2016, he says that those cases under protection of the service should be investigated. . If only refers to what happened in the centers, leaves 80% of deaths, recorded in the report of Solange Huerta, out.
Rodrigo Paz, however, says that the cases of James and Daniela are not the only ones where the State has denied transplants to children or denied post-transplant care. Rodrigo talks about the situation of Yancarla, a girl who needed three transplants and who also had a psychiatric condition of care. The third of them was only possible after the Calvo Mackenna psychiatry service – where Paz was then – interceded for her, because the problem of the girl is that she abandoned the subsequent treatment. "However, the Ministry of Health did not want to take charge of its treatment after the last transplant, the girl graduated and went to die in Purén," she says.
The psychiatrist also points to the last account given by Solange Huerta. In it another case is reported: "It is an eight-month-old girl who died in 2005 from terminal liver failure and biliary artery artery without getting a transplant."
From the National Service for Minors explained that they can not refer to judicial investigations that are ongoing and that, on September 30, 2016, the national director of Sename, Solange Huerta, delivered to the Regional Prosecutor's Office of Los Lagos all the information of children, adolescents and adults who have died in the protection system, both in the residential and ambulatory sectors, as well as in the juvenile justice system, in the context of the investigation carried out by the Public Prosecutor's Office. The delivery was made in that Office, due to the fact that the National Prosecutor, Jorge Abbott, appointed Marcos Emilfork as the person in charge of said investigation.



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