Aggressive Interventions for an Infant with Thanatophoric Dysplasia

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Editor’s Note:

This column presents a problematic medical-surgical case that may pose a medical-ethical dilemma for patients, families, and healthcare professionals. As this case is based on a real medical situation, identifying features and facts have been altered to preserve anonymity and to conform with professional medical standards. In this case, the physicians and family struggle to identify reasonable treatment for an infant with severe birth defects.

Question: What medical and surgical treatments should be offered to an infant with a birth diagnosis that portends a lifetime of chronic problematic therapeutic needs?

History:

Chelsea is a 7-week-old girl with thanatophoric dysplasia (TD) who has had a long and tumultuous hospital course since birth. Her diagnosis was discovered on prenatal ultrasounds, and her parents met with pediatric subspecialists, including both neonatology and pediatric palliative care. They received counseling on Chealsea’s diagnosis, its severe lung pathology, and poor survival rates. They discussed possible management and anticipated challenges, including the possibility that Chelsea would not respond to such interventions. The team and the parents focused on the “moment-by-moment” information gathering and decision-making in the delivery room, only briefly touching on the inevitable long-term support needs if Chelsea survived. Despite the counseling the parents received, they felt as if a trial of resuscitation was in Chelsea’s best interests after birth.

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Cite as: Sara S. Manetta, Peter D. Murray, and Ferdinand D. Yates, Jr, “Aggressive Interventions for an Infant with Thanatophoric Dysplasia,” Ethics & Medicine 38, no. 3 (2022): Online first.

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About the Author

Sara S. Manetta, MD
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Sara S. Manetta, MD is a first-year neonatal-perinatal medicine fellow at the University of Virginia School of Medicine. She completed her pediatric residency at Rainbow Babies and Children’s Hospital in Cleveland, Ohio. Before her pediatric training, Manetta completed her medical degree at The University of Maryland. Manetta hails from the City of Brotherly Love, Philadelphia, and has clinical interests in ethics and the social determinants of health.

Peter D. Murray, MD, MSM, HEC-C
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Peter D. Murray, MD, MSM, HEC-C is an Associate Professor of Pediatrics at the University of Virginia School of Medicine. He completed his neonatal-perinatal medicine fellowship on a biomedical ethics track at Yale University School of Medicine and a biomedical ethics fellowship at Harvard University School of Medicine. Dr. Murray currently serves as the chairman of the UVA Health Ethics Committee and as an ethics consultant on the ethics consult service. His clinical interests include unilateral decision-making, periviable counseling, and the impacts of policy decisions on neonates.

Ferdinand D. Yates, Jr, MD, MA (Bioethics)
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Ferdinand D. Yates, Jr, MD, MA (Bioethics), is a retired pediatrician, living in Virginia, who has contributed to bioethics education in medical schools, colleges, hospitals and through professional societies. He earned an MA in Bioethics from Trinity International University and was Professor of Clinical Pediatrics at the State University of New York at Buffalo. He presently participates with the Center for Health Humanities and Ethics at the University of Virginia School of Medicine and serves on the Advisory Board.

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