Challenges for Children Living with Complex Chronic Disease: It Takes a Village

Abstract

Introduction: Children with complex, chronic disease face hospital readmissions, considerations for advanced technologies and fractured care coordination. This case highlights the impactful role of palliative medicine in general pediatrics. Case Discussion: 16 mo female infant with congenital Zika virus infection required admission for RSV bronchiolitis and aspiration pneumonia. PMH: severe microcephaly with skull collapse, hydrocephaly, periventricular calcifications, chorioretinal scars; 3 brief admissions due to irritability and seizures. G-tube and tracheostomy considered due to severe failure to thrive, neurologic impairment and upper airway compromise. The infant’s care involved 14 subspecialties and …