Miracle baby defies odds to become only known survivor of rare skull deformity

Credit: DaytonDailyNews

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Miracle baby is only known survivor of rare skull deformity

Credit: DaytonDailyNews

Seven-month-old Lucas Santa Maria is truly one of a kind.

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The Garfield, New Jersey, infant is the only baby known to survive exencephaly, a rare cranial condition that prevents full development of the skull, CNN reported

Although Lucas was expected to die within hours of birth, today he is home with his parents and three sisters, leaving doctors perplexed and his family elated, WKYT reported.

"The skull doesn't form, so the brain is exposed to the intrauterine environment, and usually that causes a lot of damage," Dr. Tim Vogel, director of pediatric neurosurgery at the North Jersey Brain and Spine Center, told WABC. "He's so unique."

Lucas' mother learned of the presumed fatal position during her first ultrasound and told CNN she felt from that moment she was "losing" him.

"They always said there was no possibility of him making it," she told the network.

When Lucas was eating and breathing on his own hours after birth – longer than any other infant sharing his condition has ever survived – the family began discussing treatment options and turned to Vogel.

According to CNN, half of Lucas' basal ganglia, the portion of the brain responsible for sensory-motor integration, had failed to form correctly, while the other half had and was protected. Vogel believed if he removed the damaged part of Lucas' brain it would not only reduce the likelihood of seizures and further brain damage but allow the functioning portion to assume duties the damaged portion could not undertake.

The first-of-its-kind surgery was a success, and Lucas went home weeks later.

Vogel also closed the skin around Lucas' exposed brain tissue, and as the skull bone grows the neurosurgeon will help re-shape the child's head – making it more rounded – by shaving a layer to fill in sunken areas, WABC reported.

"It's just awesome to be a part of something that is so unique, and to really know there's a promising future for Lucas," Vogel told the station.

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