Around PediHeart: Trisomy 18, An Ethical Dilemma

McCaffrey, Francis

doi:10.1007/s00246-001-0064-5

Cited by 7 publications

(2 citation statements)

References 7 publications

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“…There are scattered case reports of surgical intervention for palliation of congenital heart disease in children with trisomy 13 and 18 which have resulted in patient survival (Goodship 2000;Kaneko et al 2008;Martlew and Sharples 1995;McCaffrey 2002;Stromme et al 2000). In addition, a recent review of the Pediatric Cardiac Care Consortium database documented 35 patients with T13 or T18 that underwent cardiac surgery.…”

Section: Introductionmentioning

confidence: 99%

Pediatric Sub‐specialist Controversies in the Treatment of Congenital Heart Disease in Trisomy 13 or 18

Yates

Hoffman

Shepherd

et al. 2011

Journal of Genetic Counseling

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Trisomy 13 and 18 are associated with congenital heart disease. Cardiac palliation has been reported in the literature, but is not usually done in this population. Thus, a multi-disciplinary team may experience controversy in formulating a care plan that includes cardiac intervention. Our objective was to determine differences in recommendations for cardiac intervention in this population between physicians specializing in pediatric cardiac critical care, neonatology, and genetics. A web-based survey was performed between April 2007 and August 2008. This survey evaluated surgical and transcatheter cardiac palliations that had been performed for individuals with trisomy 13 or 18 at the respondent's institution, the respondent's recommendations for cardiac intervention in hypothetical symptomatic patients with trisomy 13 or trisomy 18 and the influence of parental preference on these recommendations. Eight hundred fifty-nine responses were obtained from a primarily academic practice setting (59%). Cardiologists were most likely to recommend intervention; low risk interventions were recommended by 32% of cardiologists, 7% of neonatologists and 20% of geneticists. Parental request to intervene resulted in a 3 fold increased in the likelihood of all specialist recommending intervention. Counseling of families frequently occurred by multiple sub specialists (50%) and there was frequently (71%) a difference in opinion. Individuals with trisomy 13 or 18 are receiving cardiac intervention at many institutions. Cardiologists were more likely than geneticists or neonatologists to recommend intervention on all heart lesions other than single ventricle palliation which no specialists recommended. Parental wishes that "everything be done" significantly influenced all specialists' recommendations.

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Section: Introductionmentioning

confidence: 99%

Pediatric Sub‐specialist Controversies in the Treatment of Congenital Heart Disease in Trisomy 13 or 18

Yates

Hoffman

Shepherd

et al. 2011

Journal of Genetic Counseling

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“…The main problem is ethical rather than technical (14). It is to have a confident relationship with the parents and to evaluate together, as well as possible, the best interests of such a patient, namely the quality of life and the future if surgery is not attempted.…”

Section: Discussionmentioning

confidence: 99%

Anaesthetic management for Edward's syndrome

Courrèges

Nieuviarts

Lecoutre

2003

Pediatric Anesthesia

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We report the anaesthetic management for a Cohen procedure in a girl with Edward's syndrome (trisomy 18). Information in the literature about anaesthetic management in trisomy 18 patients is poor. The patients are dysmorphic, have severe mental retardation and multiple organ malformations of which congenital heart disease is the most important. Our patient was a 7 year-old girl, such a survival being exceptional with trisomy 18. Anaesthesia is high risk and pain assessment is difficult. Establishing good relations with the family and appraising the need for surgical procedures are the main other difficulties.

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Trisomy 18 and Trisomy 13 Syndromes

Carey¹

2005

Management of Genetic Syndromes

103

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The trisomy 18 and trisomy 13 syndromes represent important and common conditions of human aneusomy. Together, their combined prevalence in live‐born infants approaches 1 in 4000 births. These syndromes are unique among chromosome disorders as well as the other conditions described in this text since about 90% of children with trisomies 18 and 13 die before their first birthday. Because of this high infant mortality rate, the conditions are sometimes labeled simplistically as “lethal.” However, about 10% of infants do indeed survive. Regardless of the figures for survival, the parents of the child and the practitioners caring for the family seek an approach to management and health supervision as in any other serious medical disorder. Ongoing support and care by professionals are crucial to a family whose child has an uncertain prognosis. This chapter will provide a concise review of the literature of the syndromes and a plan of management for the primary care of children with trisomies 18 and 13.

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Around PediHeart: Trisomy 18, An Ethical Dilemma

Cited by 7 publications

References 7 publications

Pediatric Sub‐specialist Controversies in the Treatment of Congenital Heart Disease in Trisomy 13 or 18

Pediatric Sub‐specialist Controversies in the Treatment of Congenital Heart Disease in Trisomy 13 or 18

Anaesthetic management for Edward's syndrome

Trisomy 18 and Trisomy 13 Syndromes

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