Excerpt from original CNN story
Maria Santa Maria was told she would never spend more than a few minutes with her son.
The mother of three girls from Garfield, New Jersey, had previously given birth without complications. But in the first few weeks of her most recent pregnancy, her baby was diagnosed with a rare cranial condition that is almost certainly fatal.
But now her son is 7 months old and living at home. He’s the only baby known to survive his diagnosis.
Her baby’s condition is rare
The crushing diagnosis came during Santa Maria’s first ultrasound: Part of her baby’s skull was missing. Doctors told her there was no hope for his survival.
“They always said there was no possibility of him making it,” she said. “I did feel like I was losing him.”
Her son has exencephaly, a rare condition in which a child’s skull isn’t fully formed, so the uncovered brain is exposed to amniotic fluid inside the uterus. The brain typically drives skull growth, but with part of the skull missing, the brain often grows in the path of least resistance, which can damage its function.
Previously reported cases of babies diagnosed with exencephaly have ended in death.