Baby Born with Part of His Skull Missing Becomes First to Survive Rare Condition
A baby boy in New Jersey, now 7 month old, has defied the odds by becoming the first known child born without a skull to survive for more than a few hours after his birth.
Exencephaly is a rare condition in which a baby is missing part of their skull as they develop in utero, exposing the brain to amniotic fluid in the uterus. Usually, this results in damage too severe for survival more than a few hours, Dr. Tim Vogel, Director of Pediatric Neurosurgery of the North Jersey Brain and Spine Center told ABC 7 New York.
But Lucas Santa Maria is still thriving thanks to a surgery four days after his arrival.
“I did feel like I was losing him,” admitted his mom, Maria Santa Maria, who learned of Lucas’ condition during an ultrasound at 10 weeks pregnant, according to ABC 7 New York. While terminating the pregnancy was an option, she says, it was “not what I wanted to do.”
Santa Maria told her three daughters about the condition of the fetus to prepare them for the possibility that their new sibling might not live long after his birth.
“When 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, they were told their baby brother was going to die,” she told ABC 7 New York.
But when Lucas was still breathing on his own hours after his birth, CNN reports, Santa Maria and her husband Augusto agreed to allow Dr. Vogel to perform a surgery that would potentially extend his life.
The procedure aimed to stabilize a fluid-filled sac on top of the newborn’s head that “would be unsurvivable” if ruptured, Dr. Vogel told CNN.
Fortunately, the surgery was a success.
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Not only was Dr. Vogel able to remove some of the damaged part of Lucas’ brain, according to CNN, but the procedure could reduce Lucas’ chances of additional brain damage and seizures down the line.
Today, the baby boy has “exceeded our expectations,” Dr. Vogel told to CNN. “He’s eating, trying to crawl, getting physical therapy — it’s kind of an unwritten fast-forward.”
“Lucas is going to be with me for a long time,” he continued. “Every time I see him, it’s just so encouraging.”
Santa Maria told the outlet, “Moms always say, ‘Even if we had him for 5 minutes, it was all worth it.’ Thanks to God, we got so much more than that.”