Should We Stop Calling Thanatophoric Dysplasia a Lethal Condition? A Case Report of a Long-Term Survivor

• Published in: Palliative medicine reports Vol. 1; no. 1; pp. 32 - 39
• Main Authors: Carroll, Ricki S., Duker, Angela L., Schelhaas, Andrea J., Little, Mary Ellen, Miller, Elissa G., Bober, Michael B.
• Format: Journal Article
• Language: English
• Published: 140 Huguenot Street, 3rd FloorNew Rochelle, NY 10801USA Mary Ann Liebert, Inc., publishers 01.05.2020; Mary Ann Liebert
• Subjects: Case Discussions in Palliative Medicine; lethal condition; pediatric palliative care; perinatal palliative care; prognosis; rare disease; skeletal dysplasia; perinatal palliative care; thanatophoric dysplasia; rare disease; lethal condition; prognosis; pediatric palliative care; skeletal dysplasia

Thanatophoric dysplasia (TD) is a rare skeletal dysplasia commonly thought to be lethal. In this case report, we discuss a nine-year-old male with TD and review his parents' decision making shortly after their son was born, the technology needed to sustain him, and his parents' perception...