Professional Literature – Cardiac Surgery: Ethics and Management
In addition to the information listed here, some useful books are available from the SOFT publications page:
Trisomy 18: A Handbook for Families and Trisomy 13: A Handbook for Families. These touch on legal and educational aspects as well as the diagnosis itself. Also available is “The Carebook” which provides a great deal of care information for families. These are available in both English and Spanish.
Young, C. 2020 Mixed method study of quality of life for children with trisomy 18 and 13 after cardiac surgery.PubMed; 2020 Jan 22:1-7. doi: 10.1017/S1047951120000013. [Epub ahead of print]
Weaver, MS, et al, 2018 Eliciting Narratives to Inform Care for Infants with Trisomy 18
Pediatrics, October 2018, Volume 142/Issue 4, Family Partnerships
Domingo, L, Carey, JC, et al, 2018 Mortality and Resource Use Following Cardiac Interventions in Children with Trisomy 13 and Trisomy 18 and Congenital Heart Disease Pediatr Cardiol (2018). https://doi.org/10.1007/s00246-018-2001-x
Kosiv, KA, et al, 2017 Congenital Heart Surgery on in-Hospital Mortality in Trisomy 13 and 18 Pediatrics, November 2017, Volume 140/Issue 5
Peterson, JK, et al, 2017 Long-term Outcomes of Children with Trisomy 13 and 18 After Congenital Heart Disease Interventions. Ann Thorac Surg. 2017 Apr 26. pii: S0003-4975(17)30375-2. doi: 10.1016/j.athoracsur.2017.02.068. [Epub ahead of print]
Costello, JP, et al, 2015, A Contemporary, Single-Institutional Experience of Surgical Versus Expectant Management of Congenital Heart Disease in Trisomy 13 and 18 Patients Pediatr Cardiol. 2015 Jan 23. [Epub ahead of print]
Lorenz, et al, 2013 Evolving Medical and Surgical Management of Infants with Trisomy 18
Barnes AM, Carey JC 2012. Common Problems of Babies with Trisomy 18 or 13 www.trisomy.org
Carey JC 2011. Analysis of Kaneko Y et al 2009 Cardiac Surgery in Patients with Trisomy 18 Pediatr Cardiol 30:729-734. SOFT Times Nov/Dec/Jan 2010-11
Yates AR et al 2011. Pediatric sub-specialist controversies in the treatment of congenital heart disease in trisomy 13 or 18. J Genet Couns. 2011 Oct;20(5):495-509. Abstract. A multi-disciplinary team may experience controversy in formulating a care plan that includes cardiac intervention.
Janvier A et al 2011 Pediatrics 2011;127:754–759 Ethical Rounds: An infant with trisomy 18 and a ventricular septal defect Pediatrics, Volume 127, Number 4, April 2011. The case of an infant with trisomy 18 was presented to two neonatologists and an unrelated parent. They do not agree about the right thing to do.
Carey JC 2011. review of Janvier A et al 2011 Ethical Rounds: An infant with trisomy 18 and a ventricular septal defect. Pediatrics 127:754-759. SOFT Times May/June/July 2011
Maeda et al. 2011. Am J Med Genet Part A The impact of cardiac surgery in patients with trisomy 18 and trisomy 13 in Japan. This article is a review of 134 children with trisomy 18, and 27 children with trisomy 13 from the Japanese Society of Pediatric Cardiology and Cardiac Surgery. Approximately 25% of the children had cardiac surgery. Survival was related to birth weight and gestational age.
Muneuchi J. 2011. Cardiol Young Outcomes of cardiac surgery in trisomy 18 patients. The authors described 34 Japanese children with trisomy 18. Some of the children were treated conservatively while others had cardiac surgery. The one year survival rates for the two groups were 9% and 25%, respectively. The authors conclude that some children can be helped with cardiac surgery.
Kobayashi et al. 2010. Gen Thorac Cardiovasc Surg J, Radical surgery for a ventricular septal defect associated with trisomy. Five female infants with trisomy 18 from Japan underwent full cardiac repair. All survived surgery and lived beyond 30 days with an average survival after surgery of 815 days. The authors conclude that cardiac surgery can be beneficial for some children with trisomy 18.
Kaneko. 2009. Pediatr Cardiol Cardiac surgery in patients with trisomy 18. Describes the outcome of 17 babies with trisomy 18 who received cardiac surgery.
Kaneko et al. 2008. Pediatrics Intensive cardiac management in patients with trisomy 13 or trisomy 18 Am J Med Genet Part A. This article reviewed the outcome of 31 consecutive Japanese infants with trisomy 13 or 18 born between 2000 and 2005. Some children were offered both medications and surgery for cardiac anomalies resulting in a significant increase in survival.
Carey JC 2005. Health Supervision and Anticipatory Guidance for Infants and Children with Trisomy 18 and 13 updated from 1993 Trisomy in Review, Trisomy 18, 13 and Related Disorders, Research Newsletter (SOFT)
Graham et al. 2004. Am J Cardiol Effectiveness of cardiac surgery in trisomies 13 and 18 (from the Pediatric Cardiac Care Consortium). A report of 35 cardiac surgeries performed at one of 48 reporting centers in the US, Canada and Europe.
Bhatt, et al, 2004. Management of infants with large, unrepaired ventricular septal defects (VSDs) J Thorac Cardiovasc Surg. 2004 May;127(5):1466-73. Management of infants with large, unrepaired ventricular septal defects and respiratory infection requiring mechanical ventilation
Graham, et al 2004 Pediatric Cardiac Care Consortium. Effectiveness of cardiac surgery in trisomies 13 and 18 (from the Pediatric Cardiac Care Consortium). Am J Cardiol. 2004 Mar 15;93(6):801-3.
Carey JC 1993. Trisomy in Review, Trisomy 18, 13, and Related Disorders, Research Newsletter Review of articles published 1988-1991: – Phenotype and natural history of partial trisomy 18 – Congenital heart defects – Survival studies – Oncology – Prenatal diagnosis