The Atlanta Journal-Constitution
Baby born without top of skull defying odds
The doctors and nurses spoke the blunt words more times than Maria and Augusto Santa Maria can remember: Your baby is going to die.
Baby Lucas was born at 35 weeks with no skull above his eyebrows and ears, roughly the area where a baseball cap would rest. Much of his brain had not formed properly.
Yet seven months later, after surgery at Hackensack University Medical Center, Lucas is still alive. He eats and sleeps like a champ and holds his head up during tummy time. He is almost certain to have developmental issues. There is no telling whether he will learn to walk and talk.
But all the family wanted was the chance to hold Lucas at home in Garfield, N.J., even for a day — and now that seems practically routine. The Santa Marias are thinking ahead to next year, when doctors may fashion a bone graft to replace the missing portion of the boy’s skull.
“We really don’t know what to expect,” said Tim Vogel, the surgeon who operated on Lucas three days after he was born in March. “We’re in uncharted territory with him.”
His condition was called exencephaly, meaning the brain was located partly outside the skull. It is among the rarest of a group of conditions called neural-tube defects. As the pregnancy progressed, the developing brain likely would deteriorate.
Vogel performed the six-hour surgery on March 11, three days after Lucas was born.
As Vogel began his work, what he found was somewhat encouraging. The brain stem, which controls reflexive actions, was intact, explaining why the baby could eat and breathe on his own.
But half of the cerebral cortex, the outer layer that governs higher-order thinking, was badly damaged and had to be removed.
He managed to preserve the four major arteries that traverse the brain, as well as their key branches.
The boy woke after surgery, and surprised everyone by breathing on his own.
After just a week, he was healed enough to go home.
Bone has started to grow a bit higher on the side of his head, and he may be a candidate for a bone graft next year to help the process along. A physical therapist is scheduled to visit this fall.