Every day that Lucas Santa Maria wakes up is a day that defies the odds.
His mother, Maria Santa Maria, was told at her first ultrasound 10 weeks into her pregnancy that the baby she was carrying would have almost no chance of survival because the fetus had exencephaly. It’s a very rare condition – one in which a fetus develops without a skull.
Before they’re even born, fetuses with exencephaly develop complications in utero because their brains are exposed to amniotic fluid, causing damage. If they are born alive, they don’t survive beyond a few hours.
It’s devastating news for any family to receive. The Santa Marias had the option to terminate the pregnancy rather than carry the fetus to full term only to have him die immediately. But Mrs. Santa Maria told ABC 7 New York that abortion was simply “not what I wanted to do.”
And, of course, it was her choice – the doctors would support her either way.
When baby Lucas was born on March 7, 2019, at 35 weeks, much of his brain was unformed and he was missing his skull above his eyebrows and ears. Doctors said he wouldn’t survive the day and the devastated parents prepared their three daughters for a brief meeting with their brother.
“When 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,” she said.
But Lucas didn’t die. He was alive days later, much to doctors’ surprise.
“He’s so unique. Most of the children that are born with this condition die after several hours,” said Dr. Tim Vogel with North Jersey Brain and Spine Center.
Knowing that Lucas couldn’t continue to survive with his brain developing outside a skull, doctors asked the parents if they could perform a novel procedure on the baby – one that might give him a chance to go home. The Santa Marias agreed to let them seal the gap around Lucas’ brain and remove the portion that was badly damaged.
But it took 4 days to convince the hospital to allow such an experimental procedure. Nevertheless, it was a success – Lucas survived.
As his skull grows over time, Vogel and his team will shave layers from it to fill in sunken areas on Lucas’ head created by the surgery. But there’s no telling what his physical or intellectual growth will be like.
Lucas is now 7 months old and is the first baby to ever survive the condition.
According to CNN, Vogel said Lucas’ development is similar to other 7-month-olds – he eats cereal, coos at his parents, and is learning to crawl.
“I think he’s exceeded our expectations,” he 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.”
Lucas’ neurodevelopment will be closely monitored. Because children’s brains are so resilient, doctors are hoping that Lucas might still be able to lead a fulfilling life.
Since the operation, Vogel said bone and scalp are starting to form a protective layer around the baby’s brain – and he’s even growing hair!
There will be many tricky surgeries ahead in order to shape his head, but cosmetic needs will come later, after doctors are sure they won’t interrupt his development.
For now, his parents are just enjoying their time with a baby they thought they’d never get to know.
Be sure to scroll down to see an interview with Lucas and his mom.
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