Medical Moment: Baby Lucas survives exencephaly

A rare birth defect that causes the brain to develop outside the skull is usually fatal… until now.

A new procedure helped one baby survive after birth.

Lucas Santa Maria is now two years old. An adorable little brother to his three big sisters and by all accounts, a medical miracle.

“We were gambling for when we decided to give birth to him, just a few minutes to hold him,” says Maria Santa Maria and AJ Santa Maria, Lucas’ parents. “Now, we’ve already got two years.”

Maria’s doctors induced her at 35 weeks. Lucas came into the world at six and a half pounds and 19 inches long, breathing on his own. A team of doctors developed a first-of-its-kind, six-hour surgery that drained extra fluid in his brain, removed dying brain tissue, and provided his healthy brain with protection by using skin that had developed at the base of his skull.

“We provided him with a scalp and what happens is the layerings of the brain actually formed bone,” says Timothy Vogel, pediatric neurosurgeon at Joseph Sanzani Children’s. “So, he was able to form bone around a good portion of his skull.”

The family knew that Lucas could die at any time, but he proved everyone wrong and left the NICU after one week.

“We always say God has a plan for everyone and I guess he had something bigger for Lucas and for us,” AJ says.

“When we look at the future, it’s a little scary to realize that maybe medically, he might not do much more,” Maria says. “But then I always remember that medically he’s not supposed to be here.”

Doctor Vogel says since Lucas is the first to survive the condition, no one is sure how he’ll continue to develop, or what his future holds.

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