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NJ Baby Is 1st to Survive Rare Condition Where Brain Grows Outside the Skull

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A baby in New Jersey is thought to be the first to survive a usually fatal disorder which causes the brain to grow outside of the skull.

10 weeks into Maria Santa Maria's pregnancy earlier this year, tests revealed her fetus had exencephaly, ABC 7 reported. The rare cranial condition usually results in stillbirth.

Dr. Tim Vogel, director of pediatric neurosurgery of North Jersey Brain and Spine Center told the broadcaster: "The skull doesn't form so the brain is exposed to the intrauterine environment and usually that causes a lot of damage."

As no children have been known to survive the condition long-term, doctors advised Santa Maria to terminate her pregnancy. Her other option was to give birth to him, but it was unlikely he would survive past the day he was born. Santa Maria decided to go into labor. Her husband Augusto made funeral arrangements, CNN reported.

But Lucas surprised his family and doctors by surviving longer than any other known case of a baby with exencephaly.

In a world first, Vogel and colleagues performed surgery to sew up Lucas' skin and cover up his brain tissue, saving the baby's life.

Surgeons had to cut away half of what is known as the basal ganglia, which hadn't formed properly in the womb. This part of the brain is responsible for motor control, learning, executive functions, emotions, and certain behaviors.

But thanks to the neuroplasticity of the newborn brain, doctors hope the other half will be able to take on the responsibilities of the removed segment.

A study published earlier this year, for instance, showed children who had part of their brains removed to treat severe epilepsy were still able to read, because of the organ's "remarkable" ability to rewire.

Vogel said in a statement: "After only a week in the NICU [Neonatal intensive care unit] he was able to go home eating and breathing on his own. Each day he has is a blessing."

That was seven months ago. Now, Lucas is at home, and is able to eat cereal and baby food, according to CNN.

Vogel believes Lucas is developing at a normal level, but acknowledged the child will need long-term support.

The surgeon told CNN: "I think he's exceeded our expectations. The fact that when we see him and he's eating, trying to crawl, getting physical therapy—it's kind of an unwritten fast-forward."

Over time, Lucas's skull will grow. Vogel plans to remove layers in order to fill in other areas, creating a rounded head, according to ABC 7.

Vogel told ABC 7: "He's so unique. Most of the children that are born with this condition die after several hours."

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Schedule30 Sep 2023