References
- Janvier A, Okah F, Farlow B, et al. An infant with trisomy 18 and a ventricular septal defect. Pediatrics 2011;127:754–9.
- Koogler TK, Wilfond BS, Ross LF. Lethal language, lethal decisions. Hastings Cent Rep 2003;33:37–41.
- Courtwright AM, Laughon MM, Doron MW. Length of life and treatment intensity in infants diagnosed prenatally or postnatally with congenital anomalies considered to be lethal. J Perinatol 2011;31:387–91.
- Wilkinson DJC, Thiele P, Watkins A, et al. Fatally flawed? A review and ethical analysis of lethal congenital malformations. BJOG 2012;119:1302–8.
- Leuthner SR. Fetal palliative care. Clin Perinatol 2004;31:649–65.
- Wilkinson D. The self-fulfilling prophecy in intensive care. Theor Med Bioeth 2009;30:401–10.
- McCaffrey MJ. Lethality begets lethality. J Perinatol 2011;31:630–1. Author reply 631–2.
- Brierley J, Linthicum J, Petros A. Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children? J Med Ethics 2013;39:573–7.
- Lantos JD. Trisomy 13 and 18-treatment decisions in a stable gray zone. JAMA 2016;316:396–8.
- Carter BS. End of life decisions for newborns: an ethical and compassionate process? Arch Dis Child Fetal Neonatal Ed 2016;101:F92–3.
- Roeland E, Cain J, Onderdonk C, et al. When open-ended questions don’t work: the role of palliative paternalism in difficult medical decisions. J Palliat Med 2014;17:415–20.
- Meyer RE, Liu G, Gilboa SM, et al. Survival of children with trisomy 13 and trisomy 18: a multi-state population-based study. Am J Med Genet A 2016;170:825–37.
- Nelson KE, Rosella LC, Mahant S, et al. Survival and surgical interventions for children with trisomy 13 and 18. JAMA 2016;316:420–8.
- World Health Organization G. WHO definition of palliative care. Geneva: World Health Organization; 1998. [Internet]. Available from: http://www.who.int/cancer/palliative/definition/en/ [last accessed 6 Jan 2017].
- Bennett H. A Guide to End of Life Care: [Care of children and young people before death, at the time of death and after death] [Internet]. Available from: http://www.togetherforshortlives.org.uk/assets/0000/1855/TfSL_A_Guide_to_End_of_Life_Care_5_FINAL_VERSION.pdf [last accessed 6 Jan 2017].
- Berger TM, Bernet V, El Alama S, et al. Perinatal care at the limit of viability between 22 and 26 completed weeks of gestation in Switzerland. 2011 revision of the Swiss recommendations. Swiss Med Wkly 2011;141:w13280.
- Shapiro SS, Wilk MB. An analysis of variance test for normality (complete camples). Biometrika 1965;52:591.
- Student. The probable error of a mean. Biometrika 1908;6:1–25.
- Mann HB, Whitney DR. On a test of whether one of two random variables is stochastically larger than the other. Ann Math Stat 1947;18:50–60 [Internet]. Available from: http://projecteuclid.org/download/pdf_1/euclid.aoms/1177730491.
- EUROCAT. EUROCAT Prevalence Tables (1980–2012) [Internet]. Available from: http://www.eurocat-network.eu/accessprevalencedata/prevalencetables [last accessed 1 Sep 2016].
- Federal Office of Public Health. [Prenatal screening for trisomy] [Internet]. Available from: https://www.newsd.admin.ch/newsd/message/attachments/40278.pdf. German [last accessed 10 Sep 2016].
- Bajka M, Burkhardt T, Hodel M, et al. Recommendations for ultrasonography in pregnancy. [Internet]. Available from: http://www.geburtshilfe.usz.ch/fachwissen/Documents/ESSU_dt_2011_web.pdf. German [last accessed 10 Sep 2016].
- Garne E, Loane M, Dolk H, et al. Prenatal diagnosis of severe structural congenital malformations in Europe. Ultrasound Obstet Gynecol 2005;25:6–11.
- Lakovschek IC, Streubel B, Ulm B. Natural outcome of trisomy 13, trisomy 18, and triploidy after prenatal diagnosis. Am J Med Genet A 2011;155A:2626–33.
- Parravicini E, Lorenz JM. Neonatal outcomes of fetuses diagnosed with life-limiting conditions when individualized comfort measures are proposed. J Perinatol 2014;34:483–7.
- Breeze ACG, Lees CC. Antenatal diagnosis and management of life-limiting conditions. Semin Fetal Neonatal Med 2013;18:68–75.
- Kidszun A, Linebarger J, Walter JK, et al. What if the prenatal diagnosis of a lethal anomaly turns out to be wrong? Pediatrics 2016;137:e20154514.
- McCambridge J, Witton J, Elbourne DR. Systematic review of the Hawthorne effect: new concepts are needed to study research participation effects. J Clin Epidemiol 2014;67:267–77.
- Currie ER, Roche C, Christian BJ, et al. Recruiting bereaved parents for research after infant death in the neonatal intensive care unit. Appl Nurs Res 2016;32:281–5.