When Lucas Santa Maria was born on March 7, 2019, at 35 weeks, his parents were told he wouldn’t survive the day.

Lucas was born with a severe deformity – he was missing the top part of his skull (above his eyebrows and ears) and much of his brain was developing outside of his head and without protection.

Lucas’ devastated parents prepared their three daughters to meet the baby brother they were told would never come home.

“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,” Lucas mother Maria said.

The Santa Marias knew in part what to expect when Lucas was born. They were told at their 10-week ultrasound that their fetus had a rare and fatal condition and had almost no chance of survival.

In fact, fetuses with exencephaly typically develop complications in utero because their brains are exposed to their mother’s amniotic fluid, which causes damage.

Those that are born alive rarely survive more than a few hours.

It’s unthinkable news to anyone expecting a baby.

Doctors presented the couple with 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 that was simply “not what I wanted to do.”

It was her choice and her doctors said they would support her either way.

Now, every day that Lucas wakes up in a minor miracle.

Doctors were shocked to find him still breathing the next day…and the day after that.

After a few days, it was clear that they would need to come up with a plan for the baby’s survival. It’s not a situation that’s presented itself in the past.

“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.

But an exposed brain would certainly become fatal in no time. So doctors asked the parents if they could perform a highly experimental procedure on the baby to give him a chance to leave the hospital. They wanted to seal the gap around Lucas’ brain and remove a portion of the organ that had been damaged beyond repair.

Babies are highly adaptable since they’re still developing, so the hope was that the functional parts of Lucas’ brain would take over for the missing parts and allow him to move, speak, and comprehend to some extent.

The Santa Marias agreed to let doctors attempt the surgery. What other choice did they have?

However, the hospital wasn’t so easy to convince. There’s a lot of potential liability involved in undertaking a procedure that’s never been done. But time was of the essence.

Still, it took 4 days for the hospital to let it go forward.

And it was a success – Lucas survived the surgery and started to recover.

He will, of course, need many more surgeries as his head and brain continue to develop. Vogel and his team plan to shave layers from his skull as it grows and use those fragments to fill in the sunken areas created by the initial surgery.

Lucas is now 8 months old and is the first baby to ever survive the condition.

But there’s no telling what his physical or intellectual growth will be like.

According to CNN, Vogel said that at 7-months Lucas’ development had been similar to others his age – he could eat cereal, coo at his parents, and was even 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 will be closely monitored for the foreseeable future, his neurodevelopment in particular. His case could teach us much about the developing brain.

Since his operation, Vogel said that his body is regenerating – bone and scalp are starting to form a protective layer around his brain and his hair is growing in.

The necessary surgeries will come first, and the cosmetic needs later. Doctors want to be sure they don’t interrupt his development just to make him look “normal.”

These days, his parents are just enjoying having a son – one they never thought they’d get to bring home.

Be sure to scroll down to see an interview with mom Maria Santa Maria.

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Source: PEOPLE, ABC 7 New York, CNN, Fox News