On the occasion of the National Organ and Tissue Donor Day, which is celebrated this Wednesday, Macarena and Rafa explain the decision they made after the death, at the age of 12, of their son Bruno
- transplants Story of a transplant with five hearts
Macarena Fernández, mother of a child who died in 2022 and who was an organ donor after his death, has called for donation on the occasion of the National Organ and Tissue Donor Day, which is celebrated this Wednesday, and has highlighted the importance of this act of solidarity both to help other people and to the mourning of families.
“Donation in the grieving process has been very beneficial and satisfying, our psychologists tell us. That feeling that your child lives six different lives, sees through other retinas or his heart beats in another body is very satisfying”, Macarena highlighted in the act of commemoration of this Day, which was held at the Ministry of Health.
One of the objectives of Macarena and her husband, Rafa, was that “other families could alleviate that suffering” which they did not get. “We wanted other families to have the opportunity to continue leading a full life with their children,” she recounted.
Macarena and Rafa lost their son Bruno a few months ago, at the age of 12. He was born healthy, but at the age of four and a half he was diagnosed with autoimmune encephalitis of unknown cause. In this type of inflammatory disease of the central nervous system (CNS), the immune system mistakenly attacks the body’s own proteins.
“I left him in a vegetative state from one day to the next and we began a terrible journey to try to get him out of that situation,” Macarena narrated. First, they spent six months at the La Paz Hospital in Madrid. After “a lot of searches and treatments” in Spain and abroad, Bruno said “enough” after seven years of “real ordeal and suffering”. “He did everything possible and he was able to understand everything that was happening to him, but he was not able to express it. He was trapped in his body,” his mother explained.
In April 2022, Bruno was referred to the Palliative Care Unit of the Nio Jesús Hospital in Madrid, where it was found that his deterioration was already “quite significant”. However, he “held steady” until October. On that date, the worsening was already “very great” and the doctors told the family that “the end had come.”
At that moment, they decided that they were going to make their son an organ donor, which is why all the coordination of transplants in cases of this type came into operation. Macarena has remembered those “30 or so hours that the donation took to complete, in which the transplant coordination team did not fail to report at any time” and to be with the parents. “They have humanity and empathy, and you create a bond that, to this day, is as if they were part of my family,” she applauded.
He has also valued the entire act of donation for the parents at the time of his farewell: “They allowed us to embrace Bruno at all times, both his father and Amya his sister. Everything was a feeling of peace and tranquility. I was terrified of saying goodbye, which is done in the operating room, but it became one of the most peaceful moments to say goodbye to my son that I could find. We were able to say goodbye to Bruno in a very tender way, with empathy and humanity that I don’t have words”.
“Behind the numbers there are stories”
After hearing this story, the director of the National Transplant Organization (ONT), Beatriz Domnguez-Gil, has claimed the need to go beyond the figures that situate Spain as world leader in transplantsmanaging approximately six donation processes and 14 daily transplants.
“Many times we talk about numbers and numbers. But behind them there are stories of patients who have a second chance, of professionals who are dedicated to this field of medicine and, above all, there are stories of donors and families who, in such moments, tough are capable of thinking about the good they can do”, he commented.
The person in charge of the ONT has also detailed the provisional results of a study by the Public University of Navarra, the Autonomous University of Madrid and the Ministry of Health to assess the impact of posthumous organ donation on the families of donors.
According to their findings, families “Most of them express clearly that the donation has had positive effects on the development of their mourning”. In addition, “they refer thoughts about their deceased family member of great tenderness, grateful memories and recognition of the value of the donation made.” Moreover, “they feel pride in the donation or imagine that the deceased ‘lives in others’ in a real or metaphorical way.”
This research project also analyzes the arguments that led families to give their consent to organ donation. Among the most repeated are “the personal and family relief for a donation that provided quantity and quality of life to another person”, “the grateful respect for the positive will expressed in life by the deceased”, “the usefulness of the organs for sick people, which becomes more important when it materializes or is imagined in girls” or “the support in the favorable climate for donation existing in the social environment proper or general of Spanish society”.
According to the criteria of
The Trust Project
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