Baby born with part of skull missing first to survive rare condition

GARFIELD, N.J. (WABC/CNN) - A 7-month-old baby in New Jersey is already defying the odds after he survived a rare cranial condition, believed to be fatal, that he was diagnosed with before birth.

Lucas Santa Maria is the only baby in the world who lives with a condition called exencephaly, which means he is missing a large area of his skull. Doctors say most babies born with the condition die within hours.

Lucas Santa Maria, now 7 months, is the only baby in the world who lives with a condition called exencephaly, which means he is missing a large area of his skull.
Lucas Santa Maria, now 7 months, is the only baby in the world who lives with a condition called exencephaly, which means he is missing a large area of his skull. (Source: Maria Santa Maria/WABC/CNN)

"The skull doesn't form, so the brain is exposed to the intrauterine environment. Usually, that causes a lot of damage," said Dr. Tim Vogel with North Jersey Brain and Spine Center.

Lucas’ mother, Maria Santa Maria, found out about her son’s condition when she was 10 weeks pregnant.

"They recommended abortion, so that's not what I wanted to do," she said.

Santa Maria was told that even if Lucas made it to birth, he would not live past that day, so she prepared his three older sisters.

"We were in the delivery room because I wanted them to meet their baby brother. We didn't know what to expect. So, they came in and were told their baby brother was going to die," she said.

But Lucas was born an otherwise healthy little boy, according to Vogel. With his family’s blessing, he gave the infant a chance by closing the skin around his exposed brain tissue.

It’s not known how far Lucas will be able to advance physically and mentally, but his mother says he recently started eating cereal.

Now, at 7 months, the baby’s will to live keeps Vogel excited about giving him the best chances possible.

"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," he said.

As Lucas’ skull bones grow, Vogel will shave off layers to fill in sunken areas, giving him a more rounded head. He will also work with Lucas to guide his neurodevelopment and protect his brain.

Copyright 2019 WABC, Maria Santa Maria via CNN. All rights reserved.