Shortage of specialized hospitals leads families to cross Brazil in search of care

In a country with continental dimensions, Pequeno Príncipe is the only pediatric hospital to offer high-complexity care in 35 specialties through SUS (the Brazilian Public Health System)

Little Maria Manuela was born in Sena Madureira, a city located 145 kilometers from Rio Branco, capital of state of Acre, in northern Brazil. As soon as she was born, doctors noticed the girl’s yellowish color, but without specialists in the region, they were unable to reach a diagnosis. Close to completing 2 months and with her health condition getting worse, the doctors decided to refer Maria Manuela to the Pequeno Príncipe Hospital, located about three thousand kilometers away. “I came completely alone with my daughter, carrying suitcases and not knowing anything. It was very difficult,” says Odisseia Almeida Cruz, the girl’s mother.

Upon arriving at Pequeno Príncipe, the team of nephrologists discovered a rare disease and referred the little girl for a liver transplant. At the age of 4 months, she received the organ – and now, once a month, Odisseia crosses Brazil to continue the follow up treatment of her daughter.

The case of Maria Manuela is unfortunately no exception. Like her, the twins Samuel and Daniel left Brejo Santo, in the outskirts of state of Ceará, in search of a bone marrow transplant to also cure a rare disease. Lara came from Rio de Janeiro in search of treatment against leukemia. Antonela left Goiás in search of a cure for her more than a hundred convulsions a day; and Isabela leaves Santa Catarina once a month to receive care for her heart.

“Pequeno Príncipe Hospital is a national reference center for highly complex pediatric treatments that offers care in 35 medical specialties. It is the only exclusively pediatric hospital in Brazil with this range of specialties and that provide free assistance by the Public Health System (SUS, abbreviation in Portuguese),” states the Hospital technical director, Donizetti Dimer Giamberardino Filho. In his opinion , the health system should actively provide Brazilian children with a hospital the size of Pequeno Príncipe for populations of five to ten million children and adolescents, with a logic of geographic and population reference. In other words, “Brazil would need at least 20 units like Pequeno Príncipe spread across the country to serve all our boys and girls with dignity,” he advocates.

With the scarcity of structures that offer free of charge and whole care for these complex diseases, Pequeno Príncipe ends up being the alternative, even if families need to cross the country to be assisted.

Of all the admissions carried out at the Pequeno Príncipe, 6% are patients from other states. Receiving children from all over Brazil requires the institution to have a broad support structure for the accompanying family. Often, families don’t even have clothes suitable for the local climate, which is quite cold. This is the case of the Odisseia. “The temperature in my city reaches 40 degrees Celsius every day. When I get to Curitiba it was three degrees Celsius. I got clothes and blankets to be able to face the weather,” she says. “House support, meals, social assistance support with guidance on how to obtain the authorizations that the system requires and even psychological support to face so many changes are costs that are not covered by the Public Health System, but are imperative for the reality of these families,” emphasizes the executive director of Pequeno Príncipe, Ety Cristina Forte Carneiro.

“This is yet another reason that leads us to seek constant support from society. More than healthcare, we guarantee rights, and rights are not privileges. We work to offer dignity, health and life to boys and girls throughout Brazil,” she concludes.

Click below and learn more details about the story of Maria Manuela.


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