The doctors and nurses spoke the blunt words more times than Maria and Augusto Santa Maria can remember:
Your baby is going to die.
They told the New Jersey couple it might happen during pregnancy, or it might happen a few hours after birth. Within a day, tops.
The baby 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.
He is lethargic when awake, and 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 their apartment, 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.
Grim news at 10 weeks
Ten weeks into the pregnancy, when Maria Santa Maria got her first ultrasound, the technician at the clinic asked if it was her first. No, she said, smiling as she thought of her three energetic girls, Sophia, Mia, and Giana, whom she had delivered with no complications.
“OK, so we don’t have anything to worry about,” the tech said.
The scan showed otherwise.
Though the fetus was little bigger than a strawberry, it was clear that the head had not formed properly.
His condition was called exencephaly, meaning the brain was located partly outside the skull. As the pregnancy progressed, the developing brain likely would deteriorate from being exposed to amniotic fluid and from tugging forces as the fetus moved inside the mother’s womb.
It is part of a broader group of conditions called neural-tube defects, defined as a failure of the spinal column to close somewhere along its length. If the opening is near the bottom, the child will have spina bifida, most often meaning partial paralysis. If the opening is near the top, the result is usually anencephaly, in which most of the brain is missing. Collectively, these conditions occur in 5 out of 10,000 live births.
