1. Cassidy, SB, Battaglia, A, Viskochill, , Carey, JC. Trisomy 18 and trisomy 13 syndromes. In: Carey, JC, Cassidy, SB, Battaglia, A, Viskochil, eds. Cassidy and Allanson’s management of genetic syndromes. 4th ed. John Wiley and Sons; 2021: 937-956.
Google Scholar2. Nelson, KE, Hexem, KR, Feudtner, C. Inpatient hospital care of children with trisomy 13 and trisomy 18 in the United States. Pediatrics. 2012;129(5): 869-876.
Google Scholar | Crossref | Medline | ISI3. Pallotto, I, Lantos, JD. Treatment decisions for babies with trisomy 13 and 18. HEC Forum. 2017;316(4): 396-398.
Google Scholar4. Rasmussen, SA, Wong, L-YC, Yang, Q, May, KM, Friedman, JM. Population-based analysis of mortality in trisomy 13 and trisomy 18. Pediatrics. 2003;111(4): 777-784.
Google Scholar | Crossref | Medline5. Perlman, JM, Wyllie, J, Kattwinkel, J, et al. Neonatal resuscitation: 2010 international consensus on cardiopulmonary resuscitation and emergency cardiovascular care science with treatment recommendations. Pediatrics. 2010;126(5): 1319-1344.
Google Scholar | Crossref6. Janvier, A, Farlow, B, Wilfond, BS. The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics. 2012;130(2): 293-298.
Google Scholar | Crossref | Medline | ISI7. Guon, J, Wilfond, BS, Farlow, B, Brazg, T, Janvier, A. Our children are not a diagnosis of trisomy 13 or 18. Am J Med Genet. 2014;164A(2): 308-318.
Google Scholar | Crossref | Medline8. Janvier, A, Farlow, B, Barrington, KJ, Bourque, CJ, Brazg, T, Wilfond, B. Building trust and improving communication with parents of children with trisomy 13 and 18: a mixed method study. Palliat Med. 2020;34(3): 262-271.
Google Scholar | SAGE Journals | ISI9. Nelson, KE, Rosella, LC, Mahant, S, Guttmann, A. Survival and surgical interventions for children with trisomy 13 and 18. JAMA. 2016;316(4): 420-428.
Google Scholar | Crossref | Medline10. Carey, JC . Emerging evidence that medical and surgical interventions improve the survival and outcome in trisomy 13 and 18 syndromes. Am J Med Genet A. 2020;182(1): 13-14.
Google Scholar | Crossref | Medline11. Janvier, A, Okah, F, Farlow, B, Lantos, JD. An infant with trisomy 18 and a ventricular septal defect. Pediatrics. 2011;127(4): 754-759.
Google Scholar | Crossref | Medline12. Janvier, A, Farlow, B, Barrington, K. Cardiac surgery for children with trisomies 13 and 18: where are we now? Semin Perinatol. 2016;40(4): 254-260.
Google Scholar | Crossref | Medline13. Peterson, JK, Kochilas, LK, Catton, KG, Moller, JH, Setty, SP. Long term outcomes of children with trisomy 13 and 18 after congenital heart disease interventions. Ann Thorac Surg. 2018;103(6): 1941-1949.
Google Scholar | Crossref14. Lorenz, JM, Hardart, GE. Evolving medical and surgical management of infants with triomy 18. Curr Opin Pediatr. 2014;26(2): 169-176.
Google Scholar | Crossref | Medline15. McGraw, MP, Perlman, JM. Attitudes of neonatologists toward delivery room management of confirmed trisomy 18: potential factors influencing a changing dynamic. Pediatrics. 2008;121(6): 1106-1110.
Google Scholar | Crossref | Medline | ISI16. Lantos, J . Trisomy 13 and 18 – treatment decisions in a stable gray zone. JAMA. 2016;316(4): 396-398.
Google Scholar | Crossref | Medline17. Greenwood, RD, Nadas, AS. The clinical course of cardiac disease in down’s syndrome. Pediatrics. 1976;58(6): 893-897.
Google Scholar | Crossref | Medline18. Champagne, CR, Lewis, M, Gilchrist, DM. Should we mend their broken heart? The history of cardiac repairs in children with down syndrome. Pediatrics. 2014;134(6): 1048-1050.
Google Scholar | Crossref | Medline19. Yabrodi, M, Mastropietro, CW. Hypoplastic left heart syndrome: from comfort care to long-term survival. Pediatr Res. 2017;81(1–2): 142-149.
Google Scholar | Crossref | Medline20. Noonan, JA, Nadas, AS. The hypoplastic left heart syndrome; and analysis of 101 cases. Pediatr Clin North Am. 1958;5(4): 1029-1056.
Google Scholar | Crossref | Medline21. Norwood, WI, Lang, P, Hansen, DD. Physiologic repair of aortic atresia-hypoplastic left heart syndrome DD. N Engl J Med. 1983;308(1): 23-26.
Google Scholar | Crossref | Medline | ISI22. Weaver, MS, Lantos, J, Hauschild, K, Hammel, J, Birge, N, Janvier, A. Communicating with parents of children with trisomy 13 or 18 who seek cardiac interventions. Cardiol Young. 2021;31(3): 471-475.
Google Scholar | Crossref | Medline23. Peterson, R, Calamur, N, Fiore, A, Huddleston, C, Spence, K. Factors influencing outcomes after cardiac intervention in infants with trisomy 13 and 18. Pediatr Cardiol. 2018;39(10): 140-147.
Google Scholar | Crossref | Medline24. Cooper, DS, Riggs, KW, Zafar, F, et al. Cardiac surgery in patients with trisomy 13 and 18: an analysis of The Society of Thoracic Surgeons congenital heart surgery database. JAHA. 2019;8(13):e012349.
Google Scholar | Crossref25. Domingo, L, Carey, JC, Eckhauser, A, Wilkes, J, Menon, SC. Mortality and resource use following cardiac interventions in children with trisomy 13 and trisomy 18 and congenital heart disease. Pediatr Cardiol. 2019;40(2): 349-356.
Google Scholar | Crossref | Medline26. Kosiv, KA, Gossett, JM, Bai, S, Collins, RT. Congenital heart surgery on in-hospital mortality in trisomy 13 and 18. Pediatrics. 2017;140(5): e20170772.
Google Scholar | Crossref | Medline27. Pasquali, SK . Optimizing public reporting of congenital heart surgery outcomes. Ann Thorac Surg. 2017;104(1): 16-17.
Google Scholar | Crossref | Medline28. Weaver, MS, Birge, N, Hsu, H, et al. Mixed method study of quality of life for children with trisomy 18 and 13 after cardiac surgery. Cardiol Young. 2020;30(2): 231-237.
Google Scholar | Crossref | Medline29. Suto, M, Isayama, T, Morisaki, N. Population-based analysis of secular trends in age at death in trisomy 18 syndrome in Japan from 1975 to 2016. Neonatology. 2021;118(1): 47-53.
Google Scholar | Crossref | Medline30. Carvejal, HG, Callahan, CP, Miller, JR, Resnick, BL, Eghtesady, P. Cardiac surgery in trisomy 13 and 18: a guide to clinical decision-making. Pediatr Cardiol. 2020;41(7): 1319-1333.
Google Scholar | Crossref | Medline31. Rysavy, MA, Lei, L, Bell, EF, et al. Between-hospital variation in treatment and outcomes in extremely preterm infants. N Engl J Med. 2015 May 7;372(19): 1801-1811.
Google Scholar | Crossref | Medline32. Neubauer, K, Boss, RD. Ethical considerations for cardiac surgical interventions in children with trisomy 13 and trisomy 18. Am J Med Genet C Semin Med Genet. 2020;184(1): 187-191.
Google Scholar | Crossref | Medline33. Staub, K, Baardsnes, J, Hebert, N, Hebert, M, Newell, S, Pearce, R. Our child is not just a gestational age. A first-hand account of what parents want and need to know before premature birth. Acta Pediatrica. 2014;103(10): 1035-1038.
Google Scholar | Crossref | Medline34. Gaucher, N, Nadeau, S, Barbier, A, Janvier, A, Paayot, A. Personalized antenatal consultations for preterm labor: responding to mother’s expectations. J Pediatrics. 2016;185(3): 130-134.
Google Scholar | Crossref35. Feudtner, CMW . The darkening veil of “do everything”. Arch Pediatr Adolesc Med. 2012;166(8): 694-695.
Google Scholar | Crossref | Medline36. Weaver, MS, Anderson, V, Beck, J. Interdisciplinary care of children with trisomy 13 and 18. Am J Med Genet A. 2020;185(30): 966-977.
Google Scholar | Medline