{"id":1050,"date":"2022-07-20T14:07:06","date_gmt":"2022-07-20T17:07:06","guid":{"rendered":"https:\/\/pequenoprincipe.org.br\/newsano6\/en\/?p=1050"},"modified":"2022-07-22T15:01:00","modified_gmt":"2022-07-22T18:01:00","slug":"shortage-of-specialized-hospitals-leads-families-to-cross-the-brazil-in-search-of-care","status":"publish","type":"post","link":"https:\/\/pequenoprincipe.org.br\/newsano6\/en\/6\/shortage-of-specialized-hospitals-leads-families-to-cross-the-brazil-in-search-of-care\/","title":{"rendered":"Shortage of specialized hospitals leads families to cross Brazil in search of care"},"content":{"rendered":"
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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\u2019s 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 Pr\u00edncipe Hospital, located about three thousand kilometers away. \u201cI came completely alone with my daughter, carrying suitcases and not knowing anything. It was very difficult,\u201d says Odisseia Almeida Cruz, the girl\u2019s mother.<\/p>\n\n\n\n

Upon arriving at Pequeno Pr\u00edncipe, 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 \u2013 and now, once a month, Odisseia crosses Brazil to continue the follow up treatment of her daughter.<\/p>\n\n\n\n

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 Cear\u00e1, 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 Goi\u00e1s 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.<\/p>\n\n\n\n

\u201cPequeno Pr\u00edncipe 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),\u201d 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 Pr\u00edncipe for populations of five to ten million children and adolescents, with a logic of geographic and population reference. In other words, \u201cBrazil would need at least 20 units like Pequeno Pr\u00edncipe spread across the country to serve all our boys and girls with dignity,\u201d he advocates.<\/p>\n\n\n

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With the scarcity of structures that offer free of charge and whole care for these complex diseases, Pequeno Pr\u00edncipe ends up being the alternative, even if families need to cross the country to be assisted.<\/p>\n\n\n\n

Of all the admissions carried out at the Pequeno Pr\u00edncipe, 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\u2019t even have clothes suitable for the local climate, which is quite cold. This is the case of the Odisseia. \u201cThe 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,\u201d she says. \u201cHouse 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,\u201d emphasizes the executive director of Pequeno Pr\u00edncipe, Ety Cristina Forte Carneiro.<\/p>\n\n\n\n

\u201cThis 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,\u201d she concludes.<\/p>\n\n\n\n

Click below and learn more details about the story of Maria Manuela.<\/strong><\/p>\n\n\n\n

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