New Jersey baby born with brain outside of skull is first to survive condition past birth

A 7-month-old baby born in New Jersey is being considered the first to ever survive his rare condition past birth. 

The child, named Lucas, was diagnosed with exencephaly, a rare condition in which an infant's skull doesn't fully form, often causing brain tissue to grow outward from its head.

Doctors identified the condition when Lucas's mother, Maria Santa Maria, was just 10 weeks pregnant, WABC-TV reported.

"They recommended abortion, so that's not what I wanted to do," Santa Maria told WABC.

Exencephaly is typically considered a death sentence, with most children diagnosed with the condition dying shortly after they're born.

"He's so unique. Most of the children that are born with this condition die after several hours," Dr. Tim Vogel, a surgeon at the North Jersey Brain and Spine Center, told WABC.

But thanks to a first-of-its-kind surgery, Lucas was able to beat the odds. The operation involved doctors cutting away a part of the infant's brain known as the basal ganglia, which is responsible for motor control, learning, executive functions and certain emotions.

That removal stabilized a fluid sac — which doctors said looked like a water balloon — growing on top of Lucas's head. Vogel said the 7-month-old's brain should now be able to adapt, making up for the missing part by reassigning functions to different sections of the organ. 

It was the first time the procedure had ever been attempted, let alone been completed successfully. 

"I think [Lucas has] exceeded our expectations," Vogel told CNN. "The fact that when we see him and he's eating, trying to crawl, getting physical therapy — it's kind of an unwritten fast-forward."

Santa Maria said her child is now eating baby food and going to physical therapy regularly. Lucas's long-term outlook is unclear, but for now the mother is happy to have her son alive and well.

"Moms always say, 'Even if we had him for five minutes, it was all worth it,'" she told CNN. "Thanks to God we got so much more than that."

As for Vogel, he believes Lucas's situation is looking positive. 

"Lucas is going to be with me for a long time," he said. "Every time I see him, it's just so encouraging."

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