Journal of Genetic Counseling

, Volume 22, Issue 5, pp 587–593

The Decision to Continue a Pregnancy Affected by Down Syndrome: Timing of Decision and Satisfaction with Receiving a Prenatal Diagnosis

  • Emily Hurford
  • Anne Hawkins
  • Louanne Hudgins
  • Joanne Taylor
Original Research

DOI: 10.1007/s10897-013-9590-6

Cite this article as:
Hurford, E., Hawkins, A., Hudgins, L. et al. J Genet Counsel (2013) 22: 587. doi:10.1007/s10897-013-9590-6

Abstract

In order to provide the best genetic counseling possible for women who learn of a diagnosis of Down syndrome prenatally, we sought to assess the timing of the decision to continue a pregnancy and the satisfaction these women had with learning this information. Fifty-six mothers of children with Down syndrome diagnosed prenatally between 2007 and 2010 completed a survey regarding their experience with decision-making after prenatal diagnosis. Approximately one third (17/56) of participants reported they knew before getting pregnant that they would not terminate for any reason, and almost half of the participants (24/56) reported they did not decide to continue their pregnancy until after the diagnosis. Many participants (82 %; 42/56) stated that learning the diagnosis during pregnancy increased their anxiety. The majority (88 %; 45/56) also reported that if they could do it over again, they would undergo prenatal testing for preparation purposes, despite increased anxiety. Religious and spiritual beliefs as well as feeling attached to the baby were the personal factors that had the greatest impact on most women’s decision-making. Despite increased anxiety caused by learning the diagnosis prenatally, most women favored prenatal diagnosis as it allowed them time to process the information and prepare for the birth of their child.

Keywords

Prenatal diagnosis Down syndrome Decision making Amniocentesis Chorionic villus sampling Genetic counseling Genetic counselor 

Supplementary material

10897_2013_9590_MOESM1_ESM.docx (36 kb)
ESM 1(DOCX 36 kb)

Copyright information

© National Society of Genetic Counselors, Inc. 2013

Authors and Affiliations

  • Emily Hurford
    • 1
    • 3
  • Anne Hawkins
    • 2
  • Louanne Hudgins
    • 2
  • Joanne Taylor
    • 2
  1. 1.Department of GeneticsStanford UniversityStanfordUSA
  2. 2.Department of Pediatrics, Division of Medical GeneticsStanford UniversityStanfordUSA
  3. 3.University of California, San Francisco/San Francisco Perinatal Associates, Inc.1 Daniel Burnham Court, Suite 230CSan FranciscoUSA

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