Baby Lucas Survives Exencephaly

Baby Lucas survives Exencephaly, thanks to a new surgery.
Baby Lucas survives Exencephaly, thanks to a new surgery.(WGEM)
Updated: Aug. 2, 2021 at 1:45 PM CDT
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HACKENSACK, N.J. (Ivanhoe Newswire)— Exencephaly is a rare birth defect that causes the brain to develop outside the skull, exposing the tissue to amniotic fluid in the womb. The condition has been universally fatal … until now. Neurosurgeons developed a procedure that allowed a newborn identified with the condition during his mom’s pregnancy to survive after birth and continue to thrive.

Lucas Santa Marie 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. Now we’ve already got two years,” exclaimed Maria Santa Maria and AJ Santa Maria, Lucas’ parents.

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. So he was able to form bone around a good portion of his skull,” explained Timothy Vogel, MD, Pediatric Neurosurgeon, Joseph Sanzani Children’s Hospital.

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,” shared AJ.

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

Dr. Vogel says since Lucas is the first to survive the condition, no one is sure how he will continue to develop, or what his future holds. His parents Maria and AJ say Lucas doesn’t speak phrases, but he coos, and does say “mom.” Doctors will perform a third surgery around his fifth birthday to give his brain more room as he grows.

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