Alex Simpson was diagnosed with a rare congenital disorder called hydranencephaly — a condition that left her with nearly no brain. For two months, her parents didn't know why she kept crying as she seemed to be a typical baby in many aspects.
According to a study published in Acta Paediatrica, most babies with the condition die before their first birthday. The longest any known person has lived with the rare condition was 35 years.
The Pediatric Brain Foundation notes that some children display no obvious symptoms of hydranencephaly at birth, but “increased irritability, increased muscle tone, and the lack of purposeful movement generally initiate suspicion of an underlying cause.”
The study stated that drastic loss of cortical tissue has encouraged the default assumption that these children are not conscious.
Alex's case confirms this. At 10 years old, she has part of her cerebellum, allowing her to maintain some awareness of her surroundings.
“She knows her mom and dad, her little brother and knows when bad things are going on; she will cry or have a sad face,” her father Shawn Simpson says.
Researchers surveyed 108 primary caregivers of children with hydranencephaly and concluded that they are not only physiologically awake but conscious during waking, which makes it appropriate to apply the concept of quality of life to these children.
News Source: Yahoo
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