Alex Simpson seemed to be your typical infant when she was born. The only difference was, when her parents brought her home from the hospital, she had a propensity for crying; almost 20 hours a day at times.
Her parents were perplexed for a couple of months, until they received a diagnosis. Alex was diagnosed with a rare congenital disorder called hydranencephaly, meaning she was born missing a good chunk of her brain.
Babies with the condition rarely live to see their first birthday. The longest known survivor with the disease lived to 33, according to the Pediatric Brain Foundation.
Victims with the disease rarely display symptoms of the condition at birth, though “increased irritability, increased muscle tone, and the lack of purposeful movement generally initiate suspicion of an underlying cause,” can be clues.
Amazingly, Alex is now 10. She has part of her cerebellum, allowing her to maintain some awareness of her surroundings.
“She knows her mom and dad, her little brother,” her father, Shawn Simpson, says. “She knows when bad things are going on; she will cry or have a sad face.”
This is possible based on what researchers have leaned through the Acta Paediatrica study. It observed that “drastic loss of cortical tissue … has encouraged the default assumption that these children are not conscious.”
In the study, scientists had caregivers of children with hydranencephaly ask questions like, “Will your child echo or imitate you?” A good number were responsive, leading to the conclusion: “that they are not only physiologically awake, but conscious during waking, makes it appropriate to apply the concept of quality of life to these children.”
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