Contemporary bioethics and policy changes for children with profound disabilities: Cardiac Surgery in Children with Trisomy 18

Social attitudes and medical care for infants and children with trisomy 21 have changed profoundly in the last 50 years. Decisions not to perform life extending surgery such as gastrointestinal and cardiac repair in the 1970s and 1980s have given way to the routine performance of surgery, and participation in the “Special Olympics” and meaningful employment, for some. However, social and medical attitudes towards children with more significant developmental disabilities, such as those with trisomy 18, continues to evolve. The clinical standard wherein cardiac surgery was rarely offered to children with Trisomy 18 is now quite variable with some centers performing surgery but others not. This raises questions for both clinicians and parents about 1) which interventions, and in which clinical contexts, should be made available to these children and 2) ethical arguments for and against making surgery available.
This panel will explore the parental experience of navigating cardiac surgery in infancy, changing epidemiological data, bioethical arguments regarding cardiac surgery, forthcoming recommendations from the American Association for Thoracic Surgeons, and challenges clinicians face providing counseling and recommendations. After a five-minute introduction, each of the five speakers will talk for 10-12 minutes, followed by a 30-minute discussion about bioethics scholarship to address unresolved questions about trisomy 18, ideas for clinician education and training, and advocacy on behalf of families.

Authors: Benjamin Wilfond, Seattle Childrens Research Institute; Jennifer Potter, Parent; John Carey, University of Utah; Mark Mecurio, Yale University; Katherine Kosiv, Yale University