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Performance of an interdisciplinary hospital team in pediatric palliative care

case report

Autores/as

Cristiane Maria Carvalho Lopes Faculdade São Leopoldo Mandic, Department of Primary Health Care - Campinas, São Paulo, Brazil. https://orcid.org/0000-0003-3548-5098
Gláucia Maria Santos Pereira Tavares Prefeitura Municipal de Campinas - Campinas, São Paulo, Brazil. https://orcid.org/0009-0006-1737-2638
Esther Angélica Luiz Ferreira Universidade Estadual Paulista, Faculdade de Medicina - Botucatu, São Paulo, Brazil. https://orcid.org/0000-0003-2582-9045
Anna Maria Carvalho Candido Lopes Universidade da Cidade de São Paulo - São Paulo, São Paulo, Brazil. https://orcid.org/0009-0003-8862-7261
Raquel Amarante de Paula e Silva Hospital Municipal Waldemar Tebaldi - Americana, São Paulo, Brazil. https://orcid.org/0009-0009-9941-2913
Ivone Maria da Rocha Meneguella Hospital Municipal Waldemar Tebaldi - Americana, São Paulo, Brazil. https://orcid.org/0009-0005-3597-6091

DOI:

https://doi.org/10.59679/LAPC20230058

Palabras clave:

Thanatophoric Dysplasia, Palliative Care, Congenital Anomalies

Resumen

The article aims to report a rare case of a patient diagnosed with Thanatophoric Dysplasia admitted to the Neonatal Intensive Care Unit of a tertiary hospital in a city in the inner state of São Paulo. The female infant has been hospitalized since birth, with history, physical, and radiological examination suggestive of Thanatophoric Dysplasia and an unaltered karyotype test, whose evolution and severity made it necessary to institute minimally invasive care. She remained in the Neonatal Intensive Care Unit for five months and 23 days requiring invasive
mechanical ventilation through a tracheostomy and gastrostomy feeding, until the irreversible nature of the condition was determined. The purpose of this case report aims to promote reflection on the importance of a multidisciplinary approach to patient care, providing quality of life, orthothanasia, and the importance of family-centered care practices.

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