With three healthy kids, the last thing Maria Santa Maria expected was a birth defect in her fourth child, but during her first ultrasound, doctors delivered devastating news. Her baby boy’s skull hadn’t closed properly while in utero.
“[A doctor] was showing me on the ultrasound that the skull hadn’t closed and the brain was coming outside of the skull,” Maria told Good Morning America. “All my previous pregnancies I never had anything wrong, so that’s something I wasn’t expecting.”
“The first thing they told me to consider was abortion,” she added.
But Maria and her husband decided against an abortion and chose to carry out the pregnancy instead. They knew the odds were against them. Their three existing children even saw a child life specialist to prepare them, just in case little Lucas didn’t make it.
“That broke my heart,” Santa Maria said. “I wanted them to meet their baby brother before he had passed and thank God that time never came.”
Four days after birth, Lucas received a life-saving surgery. Doctors closed up the area where his brain protruded, removing abnormal brain tissue to reduce the risk of damage to the functioning parts of his brain. Over time, his skull will continue to grow. A layer will eventually need to be shaved off to fill in the sunken areas and protect the remainder of his brain.
As of right now, he is the longest living baby with his condition, exencephaly. But he’s doing more than just surviving . . . this little guy is thriving!
He’s cooing and babbling. He’s even trying to crawl.
“Lucas is one-of-a-kind in this world,” Dr. Tim Vogel, chief of pediatric neurosurgery at the North Jersey Brain and Spine Center told “GMA.” “He’s setting his own records moving forward as a child whose survived these conditions.”
“All the medical literature about exencephaly [says] there’s never been a person to survive after three hours,” Vogel added. “For him to be seven months and meeting milestones…it’s a message of hope to other families.”
And the Santa Maria family couldn’t be happier about Lucas’ progression.
“I don’t see myself without Lucas,” she said. “Sometimes there are miracles. We wanted to meet our baby boy…to us it’s a blessing every day.”
