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Evaluation ViewAttendees 60

Cardiology

Clinical Bioethics

Critical Care

Genomics/Epigenomics

Hospital Medicine

Neonatology

Palliative Care

Pulmonology

Trainee
Session Type: Hot Topic Symposia

Clinical, ethical, and social considerations for children with Trisomy 13 and 18: intensive care interventions, cardiac surgery, and tracheostomy

Monday, April 28, 2025
9:15am – 10:45am HST
Location: Convention Center: 315
CE: 1.5

Selected By: CC
Co-sponsored By: Neonatal
Disclosure(s):
Benjamin S. Wilfond, MD: I do not have any relevant financial / non-financial relationships with any proprietary interests.

Social attitudes and medical care for infants and children with disabilities have changed profoundly in the last 50 years. For example, decisions to forego life extending surgeries such as gastrointestinal and cardiac repairs in children with trisomy 21 in the 1970s and 1980s have given way to the routine performance of surgery. However, social and medical attitudes towards children with more significant developmental disabilities and medical complexity, such as those with trisomy 18, are still controversial. The clinical standard wherein cardiac surgery, tracheostomy, and critical care interventions were rarely offered to children with trisomy 13 and 18 is now quite variable, with some centers offering interventions but others not. This raises questions for parents, clinicians, and institutions about which interventions, and in which clinical contexts, should be made available to these children. There are ethical arguments for and against making these interventions available. This panel will explore the changing epidemiological data, recent professional guidelines, ethical and organizational considerations, and parental and disability perspectives relevant to clinical decisions that pediatricians, neonatologists,pediatric critical care clinicians, palliative care clinicians, cardiologists, and pulmonologists face.

Learning Objectives:

  • Appreciate the societal factors that influence the experience of families with trisomy 13 and 18 in the NICU, PICU and at home
  • Understand the changes in clinical outcomes of children with trisomy 13 and 18 and the evolution of ethical arguments for and against these interventions
  • Consider the impact of professional society recommendations and institutional policies for medical and surgical interventions on the experience of clinicians and families

Presentations:

  • 9:15am – 9:20am HST
    Introduction

    Speaker: Benjamin S. Wilfond, MD (he/him/his) – University of Washington School of Medicine

  • 9:20am – 9:33am HST
    Using Shared Decision Making to Guide Treatment for Children with Trisomy 18: A Parental Perspective

    Speaker: Jacqueline Vidosh, MD (she/her/hers) – San Antonio Uniformed Services Health Education Consortium

  • 9:33am – 9:46am HST
    The Changing Data About Survival Outcome Related to Intensive Interventions in Children with Trisomy 13 and 18

    Speaker: John C. Carey, MD, MPH (he/him/his) – University of Utah School of Medicine

  • 9:46am – 9:59am HST
    The 2024 AATS Guidelines: Implications for Cardiac Surgery in Infants with Trisomies Who Require Advanced Respiratory Support

    Speaker: Benjamin S. Wilfond, MD (he/him/his) – University of Washington School of Medicine

  • 9:59am – 10:12am HST
    Ethical and Organizational Considerations for Navigating Disagreements Regarding Interventions in Children with Trisomies

    Speaker: Mark Mercurio, MD,MA – Yale University

  • 10:12am – 10:25am HST
    The Impact of Health System Barriers and Bias on Health Disparities: A Disability Perspective

    Speaker: Stephanie Meredith, MA, DrPH – University of Kentucky

  • 10:25am – 10:45am HST
    Q & A