We’ve all heard incredible stories about patients diagnosed with a “permanent” condition or deadly disease, only to end up overcoming it. It’s stories like these that remind us just because we or a loved one receives a medical diagnosis does not mean that the prognosis will be accurate.
When Maria Santa Maria was 10 weeks pregnant with her son, Lucas, she was informed during an ultrasound that he had a rare condition called exencephaly. Those diagnosed with this cephalic disorder have their brain located outside their skull. Because babies with this condition are often stillborn or pass away just hours after birth, doctors gave the expecting mother the option to abort her child. Rather than following through with the doctors’ suggestions, however, Santa Maria decided to continue her pregnancy.
At 35 weeks on March 7, 2019, Lucas was born. Missing a large chunk of his skull behind his forehead with part of his brain unformed, the doctors told the new mother that her newborn would pass away later that same day. Giving birth to a little one is usually an exciting time for a woman. But for Santa Maria, she was left no choice but to give the bad news to her three daughters, who were eager to see their new sibling.
“We were in the delivery room because I wanted them to meet their baby brother, so we didn’t know what to expect. So they came in, they were told their baby brother was going to die,” the mother said.
Then something unexpected occurred: Lucas didn’t pass away. Days went by, and the doctors, as well as the infant’s family, were shocked.
According to Dr. Tim Vogel of North Jersey Brain and Spine Center, “He’s so unique. Most of the children that are born with this condition die after several hours.”