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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Hawkins, A., Stenzel, A., Taylor, J., Chock, V., & Hudgins, L. (2012). Variables influencing pregnancy termination following prenatal diagnosis of fetal chromosome abnormalities. Journal of Genetic Counseling. doi:10.1007/s10897- 012-9539-1.
Jones, J. M. (2004). Tracking religious affiliation, state by state. Gallup Poll. Retrieved from: http://www.gallup.com/poll/12091/tracking-religious-affiliation-state-state.aspx.
Kornman, L. H., Wortelboer, M. J. M., Beekhuis, J. R., Morssink, L. P., & Mantingh, A. (1997). Prenatal Diagnosis, 17(11), 1011–1018.
Mansfield, C., Hopfer, S., & Marteau, T. M. (1999). Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndrome: a systematic literature review. Prenatal Diagnosis, 19, 808–812.
Natoli, J. L., Ackerman, D. L., McDermott, S., & Edwards, J. G. (2012). Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995–2011). Prenatal Diagnosis, 32, 142–153.
Schechtman, K. B., Gray, D. L., Baty, J. D., & Rothman, S. M. (2002). Decision-making for termination of pregnancies with fetal anomalies: analysis of 53,000 pregnancies. Obstetrics and Gynecology, 99(2), 216–222.
Shaffer, B. L., Caughey, A. B., & Norton, M. E. (2006). Variation in the decision to terminate pregnancy in the setting of fetal aneuploidy. Prenatal Diagnosis, 26, 667–671.
Sheets, K. B., Crissman, B. G., Feist, C. D., Sell, S. L., Johnson, L. R., Donahue, K. C., et al. (2011). Practice guidelines for communicating a prenatal or postnatal diagnosis of Down syndrome: recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling. doi:10.1007/s10897-011-9375-8.
Skotko, B. (2005). Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers. American Journal of Obstetrics and Gynecology, 192, 670–677.
U.S. Census Bureau (2010). USA Quickfacts. Retrieved from: http://quickfacts.census.gov/qfd/states/00000.html.
Verp, M. S., Bombard, A. T., Simpson, J. L., & Elias, S. (1988). Parental decision following prenatal diagnosis of fetal chromosome abnormality. American Journal of Medical Genetics, 29, 613–622.
Zlotogora, J. (2002). Parental decisions to abort or continue a pregnancy with an abnormal finding after an invasive prenatal test. Prenatal Diagnosis, 22, 1102–1106.
Acknowledgments
We sincerely thank Kelly Ormond and Andrea Kwan for their thoughtful advice and suggestions. We thank Leah Slattery for helping with recruiting participants. We wish to acknowledge the National Society of Genetic Counselors’ Prenatal Special Interest Group for funding this study through their Grant Award.
Author information
Authors and Affiliations
Corresponding author
Electronic supplementary material
Below is the link to the electronic supplementary material.
ESM 1
(DOCX 36 kb)
Rights and permissions
About this article
Cite this article
Hurford, E., Hawkins, A., Hudgins, L. et al. The Decision to Continue a Pregnancy Affected by Down Syndrome: Timing of Decision and Satisfaction with Receiving a Prenatal Diagnosis. J Genet Counsel 22, 587–593 (2013). https://doi.org/10.1007/s10897-013-9590-6
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10897-013-9590-6