Related Experiment Video
Updated: Sep 19, 2025
Modeling Encephalopathy of Prematurity Using Prenatal Hypoxia-ischemia with Intra-amniotic Lipopolysaccharide in Rats
Published on: November 20, 2015
Perinatal palliative care in an infant with exencephaly: Supporting life beyond 3 years of age
G Bayo Varão1,2, E Parravicini2, A Aziz3
1Department of Pediatrics, Hospital de Cascais Dr. José de Almeida, Lisbon, Portugal.
Insights
This case study details a newborn diagnosed with encephalocele that progressed to exencephaly. It highlights the successful management of this neural tube defect with perinatal palliative care, optimizing family outcomes.
Area of Science:
- Medical Science
- Pediatric Neurology
- Fetal Malformations
Background:
- Neural tube defects are common fetal malformations.
- Encephalocele involves brain tissue protruding through skull defects.
- Exencephaly is characterized by an exposed fetal brain, often incompatible with life.
Purpose of the Study:
- To present a unique case of encephalocele progressing to exencephaly.
- To illustrate the impact of perinatal palliative care in managing complex neural tube defects.
- To demonstrate optimized family outcomes through specialized care.
Main Methods:
- Case report of a newborn diagnosed with encephalocele at 13 weeks gestation.
- Monitoring of fetal condition progression to exencephaly.
- Implementation of comfort/palliative care approach.
Main Results:
- The infant, diagnosed with encephalocele that evolved into exencephaly, survived past 3 years of age.
- Perinatal palliative care was instrumental in managing the condition.
- Family outcomes were positively impacted by the palliative care approach.
Conclusions:
- This case underscores the potential of perinatal palliative care for neural tube defects.
- Early diagnosis and tailored palliative care can significantly improve quality of life and family support.
- Management of rare fetal malformations requires a multidisciplinary and compassionate approach.
Abstract:
Neural tube defects are the second most common type of fetal malformation in humans. Encephalocele, a type of neural tube defect, can be defined as a sack-like protrusion of brain tissue herniating through an opening hole in the skull. Its prognosis depends on the location, size, the amount of brain tissue involved, and the presence of other intracranial anomalies. Exencephaly, another type of neural tube defect, is characterized by an incomplete covering of the skull, resulting in an exposed fetal brain. It is described in the literature as incompatible with extrauterine life and, in most cases, evolves into anencephaly before birth. We present the case of a newborn that was diagnosed at 13 weeks of gestational age with encephalocele, which later in pregnancy converted into exencephaly. The parents chose an approach of comfort/palliative care; the child is still alive at 3 years of age. This case highlights how perinatal palliative care can help manage patients with neural tube defects and optimize family outcomes.
Related Concept Videos
01:25Continuing Care
01:19Restorative Care
01:21Tertiary Healthcare System