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.”
However, because Lucas’s condition was still potentially life-threatening, the doctors asked the parents if they could perform an experimental surgical procedure to increase his odds of survival. The family agreed. After four days of convincing the hospital to follow through with the surgery, little Lucas was given the procedure that involved removing portions of his brain that were badly damaged and closing the gap around his brain to provide further protection. The surgery was a success!
As Lucas’s skull grows as he gets older, Dr. Vogel and his colleagues cut off sections of his skull in layers and then use those shavings to fill in areas of the indentation that were created during surgery.
While it’s unsure what the future holds for Lucas, the doctors are still nonetheless stunned that the infant not only survived longer than other babies with his same condition but the fact that he is now seven months and doing well! In fact, Lucas has a similar developmental progression as babies without exencephaly.
“I think he’s exceeded our expectations,” Vogel said. “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.”
Due to his young age, only time will tell if his condition has lasting effects on his physical, cognition, and emotional development. However, doctors are hopeful that Lucas will grow up to live a normal, healthy life. In fact, the 7-month-old is currently developing bone and scalp, which are imperative for brain protection, and is even exhibiting new hair growth!
While he’s doing well, his neurodevelopment will continue to be observed, and he may require future surgeries, including cosmetic procedures.
Learn more about Lucas’s incredible story below!
