Abstract
A teenage mother gave birth to a baby with multiple congenital abnormalities including alobar holoprosencephaly (where the brain does not develop into left and right lobes), cleft lip/palate, severe gastro-esophageal reflux, failure to thrive, and seizure disorder. The baby's young parents each lived with their own parents, and refused to make medical decisions or communicate with the medical team.
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References
Bastek, T.K., D.K. Richardson, A.F. Zupancic, and J.P. Burns. 2005. Prenatal consultation practices at the border of viability: A regional survey. Pediatrics 116: 407–413.
Chiswick, M. 2008. Infants of borderline viability: Ethical and clinical considerations. Seminars in Fetal & Neonatal Medicine 13: 8–15.
Gupta, A.O., P. Leblanc, K.C. Janumpally, and P. Tanya. 2010. A preterm infant with semilobar holoprosencephaly and hydrocephalus: A case report. Cases Journal 3: 35.
Harrison, H. 2008. The offer they can’t refuse: Parents and perinatal treatment decisions. Seminars in Fetal & Neonatal Medicine 13: 329–334.
Harrison, H. 1993. The principles for family-centered neonatal care. Pediatrics 92: 643–650.
Kaliaperumal, C., S. Ndoro, T. Mandiwanza, F. Reidy, F. McAuliffe, J. Caird, and D. Crimmins. 2016. Holoprosencephaly: Antenatal and postnatal diagnosis and outcome. Childs Nervous System 32: 801–809.
Keenan, H.T., M.W. Doron, and B.A. Seyda. 2005. Comparison of mothers’ and counselors’ perceptions of predelivery counseling for extremely premature infants. Pediatrics 116: 104–111.
Lantos, John D. 2001. Hooked on neonatology: A pediatrician wonders about NICUs’ hidden cost of success. Health Affairs 20: 233–240.
Levey, E.B., E. Stashinko, N.J. Clegg, and M.R. Delgado. 2010. Management of children with holoprosencephaly. American Journal of Medical Genetics Part C Seminars in Medical Genetics 154C: 183–190.
Partridge, J.C., H. Freeman, E. Weiss, and A.M. Martinez. 2001. Delivery room resuscitation decisions for extremely low birthweight infants in California. Journal of Perinatology 21: 27–33.
Payot, A., S. Gendron, F. Lefebvre, and H. Doucet. 2007. Deciding to resuscitate extremely premature babies: How do parents and neonatologists engage in the decision? Social Science and Medicine 64: 1487–1500.
Redlinger-Grosse, K., B.A. Bernhardt, K. Berg, M. Muenke, and B.B. Biesecker. 2002. The decision to continue: The experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. American Journal of Medical Genetics Part A 112: 369–378.
Simpson, J. 1999. Response to ‘Neonatal viability in the 1990s: Held hostage by technology’ by Jonathan Muraskas et al. and ‘Giving moral distress a voice: Ethical concerns among neonatal intensive care unit personnel” by Pam Heffernan and Steve Heilig. Cambridge Quarterly Healthcare Ethics 8: 524–526 [Book review].
Silverman, William A. 1993. Is neonatal medicine in the United States out of step? Pediatrics 92: 612–613 [Letter to the editor].
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Roscoe, L.A., Schenck, D.P. (2017). Case 3—When the Family Won’t Decide. In: Communication and Bioethics at the End of Life. Springer, Cham. https://doi.org/10.1007/978-3-319-70920-8_3
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DOI: https://doi.org/10.1007/978-3-319-70920-8_3
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