Joubert syndrome. Respiratory failure requiring home mechanical ventilation
Mercado, A.; Pedraza, L.; Mayol, P.M.; Rodríguez Santana, R.; Tejeda, C.
Boletin de la Asociacion Medica de Puerto Rico 83(10): 451-455
1991
ISSN/ISBN: 0004-4849 PMID: 1789891 Document Number: 700511
A case of Joubert's Syndrome with respiratory insufficiency requiring mechanical ventilatory support is presented. The case illustrates the complex clinical, ethical and technical aspects in the management of patients with this syndrome and the feasibility of extending mechanical ventilatory support to the home setting. A caring, knowledgeable care team and a loving supportive family are required to properly continue treatment in the home in cases of this rare syndrome.
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