Baby born with part of skull missing defies the odds and becomes first in the world to live with fatal condition


The majority of babies who are like Lucas die within a few hours after birth. But at seven months old, Lucas Santa Maria, is defying the odds set against him.

He is currently the only baby in the world who has survived and continues to live with exencephaly, a rare, fatal condition where a large portion of the skull is missing and the brain is located outside of the skull.

“He’s so unique,” Dr. Tim Vogel with North Jersey Brain and Spine Center told WABC. “Most of the children that are born with this condition die after several hours.”

When Maria Santa Maria was 10 weeks pregnant she found out her unborn child had the fatal condition. Since the prognosis was not positive, it was recommended that she get an abortion, but she did not want one.

Knowing that her son would more than likely not survive past the first day, she prepared her three daughters.

“When we were in the delivery room because I wanted them to meet their baby brother, so we didn’t know what to expect. So they came in, they were told their baby brother was going to die,” Maria said.

Despite his condition, Vogel said Lucas was born otherwise healthy. Vogel closed the skin around the newborn’s exposed brain, and as Lucas’ skull continues to grow Vogel will perform procedures in order to give him a more rounded head.

While it’s unknown how long Lucas will live, one thing is for sure – he has a will to to live.

“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 said.

Lucas is a miracle baby! 

I wish him and his family nothing but the best. I hope he is able to continue to survive and thrive.

Share this to send positive thoughts to him!