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Consciousness without cortex: a hydranencephaly family survey
1Hydranencephaly Information Network, Maple Ridge, BC, Canada.
Acta Paediatrica (Oslo, Norway : 1992)
|June 20, 2014
Summary
Caregiver reports suggest children with hydranencephaly exhibit behaviors inconsistent with a vegetative state. This challenges assumptions about consciousness and quality of life in these children.
Area of Science:
- Pediatric Neurology
- Developmental Neuroscience
- Consciousness Studies
Background:
- Hydranencephaly is often equated with a vegetative state due to presumed lack of cortical tissue.
- This assumption posits that severe brain malformations preclude consciousness.
Purpose of the Study:
- To investigate behavioral evidence of consciousness in children with hydranencephaly.
- To challenge the prevailing view of hydranencephaly as a state of unconsciousness.
Main Methods:
- Survey of 108 primary caregivers of children with hydranencephaly.
- Online questionnaire assessing child's responsiveness, emotional reactivity, mood, and agency.
Main Results:
- Detailed caregiver observations revealed multifaceted behaviors.
- A consensus emerged regarding the responsiveness and expressive behaviors of children with hydranencephaly.
Conclusions:
- Observed behaviors are incompatible with the unconsciousness typical of a vegetative state.
- Findings impact the understanding of quality of life for children with hydranencephaly.
- Re-evaluation of care and treatment approaches is warranted.
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