Evolving medical and surgical management of infants with trisomy 18

John M Lorenz1, George E Hardart

  • 1aDivision of Neonatology, College of Physicians and Surgeons, Columbia University bDivision of Pediatric Critical Care Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, USA.

Insights

Management of infants with trisomy 18 (Edwards syndrome) is shifting towards life-prolonging interventions. A collaborative, goal-directed approach, respecting parental rights, is recommended for individualized care plans.

Area of Science:

  • Genetics and Developmental Biology
  • Pediatric Medicine
  • Bioethics

Background:

  • Trisomy 18 (Edwards syndrome) historically had a poor prognosis, leading to non-interventionist approaches.
  • Evolving medical understanding and ethical considerations are reshaping care strategies for affected infants.

Purpose of the Study:

  • To review the changing management of trisomy 18 in infants and children.
  • To examine the prognosis with and without medical intervention.
  • To outline an approach for creating healthcare management plans for newborns with trisomy 18.

Main Methods:

  • Literature review of evolving management strategies for trisomy 18.
  • Analysis of factors influencing changes in care.
  • Discussion of collaborative decision-making models.

Main Results:

  • A trend exists from non-intervention towards life-prolonging management for trisomy 18.
  • Prognosis for trisomy 18 may not be as dire as previously asserted; interventions may prolong life.
  • Decision-making is shifting to a collaborative physician-parent model, respecting parental rights and subjective outcome judgments.

Conclusions:

  • Rejecting life-prolonging goals for any infant with trisomy 18 is not justifiable.
  • Management plans must be goal-directed, evaluating benefits and burdens of care options collaboratively between physicians and parents for each child.
Abstract

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