We reported the first case of a congenital intrapelvic presacral neuroblastoma in Puerto Rico managed in the early neonatal period. The preoperative diagnosis was a sacrococcygeal teratoma Altman stage IV classification. This case confirms the importance of a comprehensive physical examination and observation of low-risk newborn infants with a history of adequate prenatal care and an unremarkable fetal ultrasonogram during pregnancy.
Background Over three thousand children in Puerto Rico were potentially exposed to Zika virus infection during pregnancy during the 2016 Zika virus epidemic. This congenital exposure is an established risk factor for birth defects and neurodevelopmental abnormalities, which may appear after birth. Puerto Rico guidelines require consistent pediatric monitoring for early identification and intervention of children up to age five. Methods Our objective was to assess factors that influence caregiver adherence to Zika-related follow-up pediatric services in Puerto Rico. We conducted qualitative semi-structured focus groups and individual interviews with 57 individuals, including 35 caregivers (aged ≥18 years and a primary caregiver for a child with laboratory evidence of confirmed or possible Zika virus infection during pregnancy) and 22 healthcare providers or service coordinators. We explored participants’ views on barriers to Zika-related pediatric services and suggestions for improving appointment attendance. Interviews were recorded, transcribed, and translated. We developed and applied a coding scheme based on barriers and facilitators from the Andersen Model of Health Care Utilization and Katz Model for Adolescent Vaccine Adherence (a multi-step process influenced by adolescent and caregiver factors). Data were analyzed using thematic analysis. Results Three themes influencing adherence to Zika-related pediatric follow-up care were consistently reported throughout the interviews and focus groups discussions: (1) logistics of getting child to appointments based on clinic location, availability and costs associated with transportation, and physical requirements to transport child or multiple children; (2) complexity of requirements for follow-up appointments; and (3) caregiver burden including emotional, social, and time. Conclusion Barriers to Zika-related pediatric follow-up care in Puerto Rico are complex and multi-level. Core intervention targets should include caregiver burden, health system navigation, and coaching caregivers in communication with pediatric providers. Use of a caregiver-delivered manualized intervention led by community health workers seems appropriate to achieve these goals. Disclosures All Authors: No reported disclosures
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