Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices

Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices

Leuthner SR; Acharya K

Advances in Neonatal Care

2020

Counseling/ethics/methods; Shared Decision Making; Female; Humans; Infant Newborn; Palliative Care/ethics/methods/psychology; Parents/psychology; Pregnancy; Prenatal Diagnosis/methods/psychology; Psychosocial Support Systems; Trisomy 13 Syndrome/diagnosis/psychology/therapy; Trisomy 18 Syndrome/diagnosis/psychology/therapy

BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal counselor with a review of the pertinent obstetrical and neonatal outcome data and ethical discussion to help them in supporting families with the correct information for counseling. METHODS/SEARCH STRATEGY: This article provides a review of the literature on facts and myths and provides reasonable outcome data to help families in decision making. FINDINGS/RESULTS: These disorders comprise a heterogeneous group regarding presentation, outcomes, and parental goals. The authors maintain that there needs to be balanced decision-making between parents and providers for the appropriate care for the woman and her infant. IMPLICATIONS FOR PRACTICE: Awareness of this literature can help ensure that prenatal and palliative care consultation incorporates the appropriate facts and parental values and in the end supports differing choices that can support the infant's interests.

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May 2021 List