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American Academy of Pediatrics
Article

Trisomy 18 and Trisomy 13

Treatment and Management Decisions

T. Allen Merritt, Anita Catlin, Charlotte Wool, Ricardo Peverini, Mitchell Goldstein and Bryan Oshiro
NeoReviews January 2012, 13 (1) e40-e48; DOI: https://doi.org/10.1542/neo.13-1-e40
T. Allen Merritt
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Anita Catlin
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Charlotte Wool
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Ricardo Peverini
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Mitchell Goldstein
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Bryan Oshiro
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Abstract

In this paper, we review the complex medical, ethical, and psychosocial decisions that confront maternal fetal medicine specialists, neonatologists, parents, nurses, and other providers in the management of infants diagnosed with two chromosomal conditions generally considered as lethal anomalies. We examine the complex decision-making processes in contemporary US neonatology, including the ethical precepts of professional paternalism and parental autonomy. Medical approaches, ethical dilemmas, and the role of perinatal palliative care are discussed. Education of parents regarding medical and developmental outcomes of affected infants, disclosure of values between physicians and parents, an understanding of the role and limitations of autonomy, transparency in the dialogue among all parties regarding the principle of “best interest” for affected infants, and the medical axiom of not doing harm are essential components in the management decisions.

  • © American Academy of Pediatrics, 2012. All rights reserved.

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NeoReviews
Vol. 13, Issue 1
1 Jan 2012
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Trisomy 18 and Trisomy 13
T. Allen Merritt, Anita Catlin, Charlotte Wool, Ricardo Peverini, Mitchell Goldstein, Bryan Oshiro
NeoReviews Jan 2012, 13 (1) e40-e48; DOI: 10.1542/neo.13-1-e40

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Trisomy 18 and Trisomy 13
T. Allen Merritt, Anita Catlin, Charlotte Wool, Ricardo Peverini, Mitchell Goldstein, Bryan Oshiro
NeoReviews Jan 2012, 13 (1) e40-e48; DOI: 10.1542/neo.13-1-e40
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  • Article
    • Abstract
    • Objectives
    • Introduction
    • Natural History
    • Initial Medical Management
    • Legal Issues Specific to Trisomy 18
    • Arguments Regarding Parental Autonomy
    • Attitudes Among Physicians
    • Ethical Perspectives
    • Information Available to Parents
    • Counseling and Medical Decision-Making
    • Role of Perinatal Palliative Care
    • Palliative Care Consultation Before Delivery
    • Acknowledgments
    • Footnotes
    • References
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