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Should nonintervention (or what some physicians call comfort care) be offered as an option to parents of neonates with hypoplastic left heart syndrome (HLHS)? While this may have been a reasonable choice 2 decades ago, I will argue that—for 2 primary reasons having to do with improvements in outcomes over time and by comparing HLHS with other life-threatening pediatric conditions—nonintervention should no longer be offered.
Let me state up front that I have come to these opinions through working at 2 large tertiary care, academic medical centers during the past 20 years. Both of these centers have been and still very much are strong advocates for intervention in children with high-risk, complex congenital heart disease (CHD). These centers have cared for many children whose families specifically traveled there for these high-risk interventions. My opinions undoubtedly reflect that bias and experience. My practice and research have focused on cardiac intensive care and outpatient pediatric cardiology, including direct care and treatment of postoperative patients through childhood. Admittedly, my perspective reflects a different experience and outlook than those that many pediatric cardiologists, neonatologists, and pediatric intensivists have had in the same time frame. However, participating in and observing first hand the progress that has been made in HLHS in the past 2 decades has been particularly rewarding and forms the basis of my opinions.
Wernovsky G. The Paradigm Shift Toward Surgical Intervention for Neonates With Hypoplastic Left Heart Syndrome. Arch Pediatr Adolesc Med. 2008;162(9):849-854. doi:10.1001/archpedi.162.9.849