Mariana Aparecida Silvério Fabiano was only 14 years old when she saw her life suddenly change. Always very active, with cycling and equestrian as hobbies, the young woman had to spend long periods in hospitals after she suffered three digestive bleeding and was diagnosed with primary biliary collangitis, a liver disease that causes inflammation, cirrhosis and liver failure.
“I started to have symptoms of a simple cold. But when I got home, I had my first digestive bleeding. From there, my life stopped,” he says to CNN.
Right at the first appointment with a doctor, Mariana heard that she would need one. “They told me that I would not pass that night, because I had three hemorrhages followed,” he says. This happened in 2010. Today, 31, Mariana is a transplanted woman, but only received her new liver in 2023.
“The first time I was called to the transplant, I was over six years old I was on the list. I got to know the donor’s family, but that night they found that my blood was a rare type. [que precisava ser compatível]but the blood too, “he recalls.
In the meantime, Mariana had to give up all the activities she liked to do and her own autonomy. “I always enjoyed living, horseback riding and doing outdoor activities. But I had to stop everything, because I bleed a lot by my mouth,” he says. “Not even a shower I could take.”
His life only returned to the normal times after the transplant: he went back to bike, make trails and ride. Moreover, for those who heard, at 14, who would not live for long, life surprised her with another life: this month, she found that she is pregnant.
“It has always been my dream [ser mãe]. I always told God that I dreamed of having my family, and my doctor said I could try when I was prepared. But I think I would never be prepared. There are many traumas we passed, “he says.” This was only possible because of the “yes” of a family [em relação à doação de órgãos]. If it wasn’t for this family that agreed to donate the organs of an entity that left, I would not be living my dream of being a mother, “he concludes.
Family refusal for organ donation is still a challenge to accelerate transplant line
Mariana’s story is just one of thousands. In 2024, the, with more than 30,000 procedures performed, according to the Ministry of Health.
In the country, the Heart Institute (Incor), the Complex of the Hospital das Clínicas of the University of São Paulo (HC-USP), the Hospital Complex of the Federal University of Ceará (UFC) and the Einstein Hospital Israelita are some of the references in organ transplantation. The latter, although private, performs the procedure in SUS patients, with 90% of transplants being done in the public system since 2002.
However, there are still 78,000 people currently waiting for one. The most demanded in 2024, according to the folder, were: Kidney (42,838), cornea (32,349) and liver (2,387). The most transplant organs were: corneal (17,107), kidney (6,320), bone marrow (3,743) and liver (2,454).
One of the obstacles to the increase in the number of organ donors in Brazil is family refusal. “We have an average statistics of 40% family refusal for organ donation and we know that for a person to be a donor in brain death, he needs a first -degree relative to authorize this donation,” says José Eduardo Afonso Jr., coordinator of the Einstein Hospital Israelite transplant program to CNN.
In Brazil, organ and tissue donation is only made after family authorization after the diagnosis of brain death. So even if a person has said in life that he would like to be a donor, the donation only happens if the family authorizes. Therefore, it is important to talk to the family still in life to make clear the desire to donate.
According to the Brazilian Association of Organ Transplantation (ABTO), the number of families who refused donation of organ of dead relatives grew by 2023. In 2019, between 42% and 44% of relatives denied the donation of organ of dead relatives. In the first half of 2023, the number reached 49%.
To improve the scenario, in the opinion of Afonso Jr., it is necessary to invest in continuing education of doctors and the multidisciplinary team that works in emergency room and ICU, to know how to diagnose brain death and the main processes for notification of cases.
“Another important challenge is the reliability of the health system. Many Brazilians do not yet have a sedimentary confidence that the health system works correctly about it, and are afraid to authorize the donation,” he says.
“Now I can sleep normally”
At 62, public servant Alexandre Faro is also one of the thousands of Brazilians who have undergone transplantation. He was the first patient to be discharged after a pulmonary transplantation at the São Lucas Copacabana Hospital of Rede Americas.
Diagnosed with pulmonary emphysema at 48, after feeling extremely tired even when performing simple activities, such as getting up to go to the bathroom during their work hours. Even following bronchodilators treatment, the disease progressed and he entered the transplant line.
“When I was indicated for another pulmonologist, because there was nothing else to do with me, I was groundless,” he says CNN. Faro entered the line in February and underwent the procedure on June 12. “Valentine’s Day was my second date of birth,” he says.
Faro says that his life is now another, even with limitations – after all, the transplant was recently performed. “Before I slept with CPAP [um aparelho que ajuda a tratar apneia do sono, fornecendo fluxo constante de ar pressurizado para as vias respiratórias superiores]. I slept like a robot. Today I sleep normal. My autonomy is increasing, “he says.
“When donating organs, you are giving the possibility and expectation of someone to continue with your existence here,” he concludes.
Donation also benefits children
It is wrong to think that organ transplantation is something that is only performed in adult patients. Many children also need a new organ. This was the case of David Giló Costa, at the age of four. The little one was born in 2015 with chronic children’s renal failure, a condition characterized by the inability of the kidneys to function properly, impairing the elimination of waste and toxins in the body.
As a baby, he had to move to Recife, where he spent two years in peritoneal dialysis until he lost the peritoneum – and with him the chance to follow in that treatment, starting hemodialysis. His mother, Shirlene Giló Sobrinho Costa, 40, had to move alone with her son to Sao Paulo, where she found she was pregnant for the third time.
In 2019, David had his first body transplanted thanks to a deceased donor – the kidney of his parents, although compatible, were very large for him. In 2022, he suffered kidney rejection by his body, having to undergo a 2024 relay, also a new deceased donor.
“Kidney transplantation in children has different particulars of adult transplantation, especially when we talk about young children,” says Luciana Santis Feltran, coordinator of the Pediatric Renal Transplantation Outpatient clinic at Higienópolis Samaritan Hospital, CNN.
“Transplant surgery is more delicate and requires very experienced surgeons because the surgeon will need to connect lower-caliber veins and arteries and the chance of kidney thrombosis can be higher. Postoperatively there needs to be a very thorough care for the child to maintain a pressure good enough to keep the perfound transplanted kidney,” explains the expert.
According to Feltran, after child transplantation is required to follow up near the doctors. “The child will have a life very similar to that of a child without bankruptcy of the kidneys. He will be able to attend school, walks, trips and everything. However, he will always need to maintain his medical follow -up and take his medicines daily,” he says.
Who can donate organs?
Organ donation can be made by a living donor and a deceased donor in case of brain death. In the first case, one of the kidneys, part of the liver, spinal cord or part of the lungs can be donated. Blood compatibility is necessary in all cases.
To donate organ in life, the doctor should evaluate the clinical history of the donor and the previous diseases. In addition, the donor needs to be of legal age legally capable, healthy and consent to donation, as long as it does not harm one’s health. In addition, by Brazilian law, relatives of up to four degrees and spouses can be donors. The donation of organs of living persons who are not relatives of the receiver is made by judicial authorization.
Already the donation of organs and tissues of deceased persons is only made after family authorization. After the brain death (victims of head trauma or anoxia), the family is interviewed by a team of health professionals to inform about the donation and transplant process and request consent to donation.
The deceased donor can donate organs such as: kidney, heart, lung, pancreas, liver and intestines; And tissues: corneas, valves, bones, muscles, tendons, skin, cartilage, bone marrow, umbilical cord blood, veins and arteries.
“Despite having the largest public transplantation system in the world, Brazil faces immense heterogeneity regarding organ donation activity and transplant activity,” says Afonso Jr.
“While we have similar or better donation rates than the largest countries in the world, in terms of donation effectiveness, such as Paraná and Santa Catarina, there are states in Brazil that do not have an organ donation all year long. Organ donation culture needs to be disseminated, as well as the training of doctors and the multidisciplinary team,” he concludes.
