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Unforeseen Changes after Discontinuing Artificial Nutrition in a Patient with Giant Encephalocele
Gabrielle S Latremouille1, Luke H Mosley2,3, Brittney Whitford1
1Division of Palliative Medicine, Department of Anesthesia, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
Insights
Stopping enteral nutrition in an infant with occipital encephalocele unexpectedly improved neurological status and reduced the encephalocele size. This suggests fluid resorption may impact end-of-life care for such conditions.
Area of Science:
- Pediatric Neurology
- Palliative Care
- Medical Case Studies
Background:
- Occipital encephalocele presents significant morbidity and mortality risks in infants.
- Management is challenging due to variable prognoses.
- Palliative care is crucial but complex.
Purpose of the Study:
- To describe an unusual case of occipital encephalocele management.
- To explore the impact of altered fluid balance on neurological status and lesion size.
- To highlight the importance of individual pathophysiology in end-of-life care.
Main Methods:
- Case report of an infant with a giant, inoperable occipital encephalocele.
- Observation of clinical course following cessation of enteral nutrition at 18 months.
- Monitoring of neurological status, quality of life, and encephalocele size.
Main Results:
- Discontinuation of enteral nutrition led to increased alertness and agitation, contrary to expectations.
- Significant improvement in neurological status was observed.
- The encephalocele size markedly decreased concurrently with improved mentation.
Conclusions:
- Sustained hydration and potential systemic resorption of fluid from the encephalocele may explain improved mentation and reduced lesion size.
- This case underscores how unique disease pathophysiology can influence the end-of-life trajectory.
- Individualized palliative care approaches are vital for infants with complex neurological conditions.
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.
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