Interdisciplinary care of children with trisomy 13 and 18

Area of Science:

• Genetics and Developmental Biology
• Pediatric Medicine
• Palliative Care

Background:

• Trisomy 13 and 18 were historically considered "incompatible with life."
• Advances in medical care have led to increased survival rates for these children.
• There is a growing need to understand their complex comorbidities and care requirements.

Purpose of the Study:

• To provide a comprehensive overview of the current literature on trisomy 13 and 18.
• To detail the interdisciplinary approach to managing these complex conditions.
• To share lessons learned from an established interdisciplinary program for potential replication.

Main Methods:

• Literature review synthesizing recent research on trisomy 13 and 18.
• Informed by the practical experience of an Interdisciplinary Trisomy Translational Program.
• Analysis of medical interventions, decisional paradigms, and family-centered care.

Main Results:

• Children with trisomy 13 and 18 are surviving longer, presenting unique medical challenges.
• Effective management requires a multidisciplinary team including specialists from various fields.
• Family considerations and communication are integral to care planning and decision-making.

Conclusions:

• Improved survival necessitates a shift towards comprehensive, interdisciplinary care models.
• The discussed program offers a framework for managing complex pediatric genetic conditions.
• Replication of these interdisciplinary strategies can enhance care for children with trisomy 13 and 18 and their families.