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 Chelsea’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 . . .
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