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The outlook for children with schizencephaly is grim. Some patients are stillborn, others are “not compatible with life” and others succumb to medication-induced organ failure. Barbara has connected with parents of children suffering from this condition, and many have lost the battle.
By the time Nova was two years old, she was having all types of seizures and was taking six anti-seizure medications. But they weren’t working. Doctors had turned to simply trying to sedate her, including the use of benzodiazepines – potent psychoactive drugs known through names such as Xanax and Valium.
If Nova wasn’t in a state of seizure, Barbara says the cocktail of drugs kept her in an immobilized, completely unresponsive state, with no apparent awareness of her surroundings. Barbara tearfully described a moment when she tried to get Nova to play with some small bells, lifting Nova’s hand to touch them. But Nova, eyes rolled to the back of her head, just let her hand drop.
Barbara began to “question how [Nova] could ever have a quality of life.” After several MRI and EEG scans, the Texas neurologist said Nova was a good candidate for brain surgery called lesionectomy, which would remove most of the brain she had left. There is no guarantee it would work, and the extreme procedure could result in Nova’s death. Full story...
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The outlook for children with schizencephaly is grim. Some patients are stillborn, others are “not compatible with life” and others succumb to medication-induced organ failure. Barbara has connected with parents of children suffering from this condition, and many have lost the battle.
By the time Nova was two years old, she was having all types of seizures and was taking six anti-seizure medications. But they weren’t working. Doctors had turned to simply trying to sedate her, including the use of benzodiazepines – potent psychoactive drugs known through names such as Xanax and Valium.
If Nova wasn’t in a state of seizure, Barbara says the cocktail of drugs kept her in an immobilized, completely unresponsive state, with no apparent awareness of her surroundings. Barbara tearfully described a moment when she tried to get Nova to play with some small bells, lifting Nova’s hand to touch them. But Nova, eyes rolled to the back of her head, just let her hand drop.
Barbara began to “question how [Nova] could ever have a quality of life.” After several MRI and EEG scans, the Texas neurologist said Nova was a good candidate for brain surgery called lesionectomy, which would remove most of the brain she had left. There is no guarantee it would work, and the extreme procedure could result in Nova’s death. Full story...
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