Baby Born With Only Part of Skull Survives

A cracked skull which would normally lead to a person's death.

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A cracked skull which would normally lead to a person's death.

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Seven months ago, a mother sat in her home in Garfield, New Jersey, explaining to her three daughters why their new brother wouldn’t survive. The doctors told the mother that no baby with her son’s condition had ever survived. She thought that the first few moments she spent with her baby would be her only. Except the baby did survive. It made history.

Maria Santa Maria’s baby Lucas was diagnosed even before he was born with exencephaly, an extremely rare developmental condition where the skull does not form properly, leaving missing parts in the skull. This condition often causes brain matter to develop outside of the head. All other babies with this condition had died shortly after being born, leaving families only a few hours to spend with them. Doctors even told Maria to abort the baby, but Maria refused, hoping that their daughters would have at least a few moments with him. 

 

Tim Vogel, the chief pediatric neurosurgeon at New Jersey Brain and Spine Center said, “There’s just enough protection of the brain, but it’s usually not functional. All other cases, aside from Lucas, are not survivable.” Lucas had shown signs that he could survive exencephaly. He was healthy except for the hole in his skull, and so Vogel designed a surgery that he thought could save Lucas. When Lucas was born, he defied the odds, becoming the first baby with exencephaly that survived for longer than three hours. After four days, Vogel decided to perform the surgery.

 

The surgery closed the skin over the brain and removed the damaged basal ganglia of the brain so that the healthy parts would not be affected by it. The basal ganglia controls movements of the body and some emotions. Lucas’s absence of a basal ganglia won’t affect him in the future. His brain was at such a young age at the time of the surgery that it could adapt, and the brain would “reassign” the missing basal ganglia’s jobs to other sections. This reduced Lucas’s risk of seizures and any further damage to his brain. The surgery was a success, and a few weeks later, Lucas was allowed to go home with a fluid sac attached to his head.

 

Seven months later, Lucas is thriving with his family. With frequent physical therapy, Lucas seems to be right where a baby his age should be developmentally. Under the watchful eye of Vogel, Lucas is eating cereal and is trying to crawl, amazingly missing the part of the brain that controls movement and some emotions. Maria says she is amazed every day and says what carried her through was hope. She said, “Moms always say, ‘Even if we had him for five minutes, it was all worth it,’ Thanks to God we got so much more than that.”

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