Unforeseen Changes after Discontinuing Artificial Nutrition in a Patient with Giant Encephalocele

Abstract

Background:

Infants born with occipital encephalocele carry a high morbidity and mortality risk. Palliative care plays a central role in their management, which is difficult due to variability in outcomes and prognosis.

Case Description:

An infant with an inoperable giant occipital who had remained admitted to the hospital since birth experienced a progressive decline in mental status and quality of life. Her family made the decision to stop enteral nutrition at 18 months of age. In contrast to the expectation of progressive fading of consciousness, the patient became increasingly alert and agitated with notable improvement in neurological status. Simultaneously, her encephalocele significantly decreased in size.

Conclusions:

The patient’s protracted end-of-life course with signs of sustained hydration, along with improved mentation and encephalocele size reduction, suggests that fluid within the defect was systemically resorbed. This case demonstrates how individual disease pathophysiology can impact the end-of-life course.