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The three daughters of a 38-year-old housewife, Ninivalda Pereira Macedo, needed a liver transplant. After periods of waiting and anxiety, all three were successful. Born with a genetic condition that compromises the functioning of the organ, girls, ages 15, 12 and 10, must be kept healthy to wait for a compatible donor.
This is the first case of liver transplantation in more than two siblings, in patients with progressive familial intrahepatic cholestasis, performed at the Children's Institute of the United States. Clínicas Hospital of the Faculty of Medicine of the University of São Paulo
Lindalva Macedo dos Santos, 15, was born with the disease, which causes an accumulation of bile in the liver, compromising the functioning of l & # 39; organ. When she was two years old, she was ill and was taken to a basic health unit (UBS) in the eastern part of the capital. "The doctor said that she was serious and she was referred to Baby Jesus Hospital, and then to the Hospital das Clínicas." When she was 2, she queued, "recalls her mother
., Parents are usually donors, but girls did not have that option." In children, between 80% and 90% of the transplants are given by the mother or mother through the transplant, when a part of the liver is transplanted, in which case there was a particular characteristic. for genetic and clinical reasons, "says Uenis Tannuri, head of pediatric surgery and liver transplantation at the Instituto da Criança
. Only when Lindalva was 8, in 2010, the transplant was done. "It was a long operation that stirred a lot at home, but I was not afraid that my other daughters would have the problem because they were born healthy," says the mother.
The following year, the daughter of Ninivalda, Juliana Macedo dos Santos, now 12 years old, began to be accompanied by the department of hepatology of the hospital. She had itching since the age of 2 years and it is this symptom that helped her diagnosis. "They had different symptoms.It was noticeable in Lindalva because of swelling in her belly.Juliana started with an itch.It was people who said that it was there. food allergy, seasoning, but it was not.It did the exams and had the diagnosis "
That's how the family found themselves online to try to get an organ for another girl. While waiting, in 2015, Priscila Macedo dos Santos, now 10 years old, began to show a yellowish color, an indication that liver function is not doing well.
In September 2016, the matching donor appeared for Juliana. She spent more than two months in the hospital, and Priscilla got worse at that time. "She had a haemorrhage when Juliana was hospitalized and lost a lot of blood," said the father of the girls, Mason Joelson Pereira dos Santos, 42 years old.
Priscila was able to receive the organ in March of this year. . The three still have a medication routine: the youngest takes ten medications and the eldest, one, but leads a normal life. Lindalva and Juliana go to school, and the youngest daughter is expected to return to school after this year's holidays.
Even when faced with hospital visits for examinations and hospitalizations, the family has the family room decorated with pictures of young women. These are recordings in different phases of their lives, but in none of them do they look like a sick person. What differs from the people of their age today is the story of the struggle for life and the diet that they follow. "It must be a food without salt and without fat, but they are well," says Ninivalda
Relief
Santos is relieved by the fact that all three have managed to graft themselves and not to hide gratitude for the medical team. "I just want God to enlighten these doctors, if they were not them, my daughters would not be there, sometimes we felt defeated, there was a lot of ups and downs, and that was Is something we are talking about, but that is "
Dr. Tannuri, who is also a full professor in the discipline of Pediatric Surgery and Liver Transplantation at the Pediatrics Department of the FMUSP, says that the The case of the three sisters was a "multiplied challenge."
"I saw this kind of case with two brothers and sisters, but it was the first we had with three, since the beginning of the program , our commitment was to control the girls so that we could do the transplant. for the joy of seeing the three sisters survive and being a procedure practiced in a public hospital, "he says. Transplantations
Currently, of the 33,154 people waiting for a transplant in the country, 1,289 are waiting for a liver, according to the Ministry of Health. Health In 2017, there was a 12.1% increase in liver transplants compared to 2016 and a 15.9% increase in procedures with living donors. The information comes from the newspaper O Estado de S. Paulo
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