Lucas Santa Maria, of Garfield, New Jersey, is believed to be the first known survivor of a rare brain disorder called exencephaly.
The little boy celebrated his second birthday earlier this year, and his parents, Maria and A.J. Santa Maria, believe his life has a purpose, WNDU 16 News Now reports.
“We always say God has a plan for everyone, and I guess he had something bigger for Lucas and for us,” his father said.
About three years ago, the Santa Maria family was overjoyed at the news that they were expecting their fourth child.
However, their joy turned to anguish during Maria’s 12-week ultrasound appointment. Maria Santa Maria said she was alone in the room when she learned that her unborn son had a rare, fatal condition called exencephaly, in which the brain grows outside the skull.
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“Until Lucas, there were no known cases of survival,” according to Hackensack Meridian Health, the hospital group that provided care for the Santa Maria family.
As often happens in such cases, her doctor suggested that she consider having an abortion.
“Never before had I considered terminating a pregnancy,” Maria said afterward. “And suddenly I was scared and sad and forced to think about it all by myself. But I just knew that it was not something I wanted to do.”
She and her husband began scouring the internet for information about exencephaly, hoping to find other stories of children who survived, according to a report from the hospital. Maria said they found stories of parents who were able to hold their babies for a few minutes before they died, but none about children who survived.
“I thought that if I could just hold my baby for a few minutes, it would all be worth it to me,” Maria said.
The family began making funeral plans. They hired a photographer to come take photos of the family at the hospital right after Lucas was born, and his three older sisters painted a pillowcase with their handprints for their baby brother, knowing that they may never have the opportunity to hold him, according to the hospital.
At the same time, a doctor at Joseph M. Sanzari Children’s Hospital found out about their situation and gave them a reason to hope. Dr. Timothy Vogel, the director of pediatric neurosurgery, proposed an experimental surgery that potentially could help Lucas if he was born alive. After he talked with the Santa Maria family about the possibility, they agreed to try.
“We had to invent a surgery,” Vogel told the hospital. “There was no roadmap or literature that says how to repair this.”
On March 7, 2019, Lucas was born weighing 6.5 pounds and breathing without assistance, according to the report. After showing strong signs of life, Vogel and his team decided to go through with their plans for surgery.
Here’s more from the report:
A team of doctors developed a first-of-its-kind, six-hour surgery that drained extra fluid in his brain, removed dying brain tissue, and provided his healthy brain with protection by using skin that had developed at the base of his skull.
“We provided him with a scalp and what happens is the layerings of the brain actually formed bone,” says Timothy Vogel, pediatric neurosurgeon at Joseph Sanzani Children’s. “So, he was able to form bone around a good portion of his skull.”
The surgery was a success, and Lucas grew well enough to go home a few days later, his parents said.
Though he only has half of his brain, Lucas met all the major development milestones for a typical baby when he turned seven months, including beginning to crawl and eating cereal, his mother said.
“He’s just a normal, healthy baby. He sleeps a bit more than most babies, but he’s always on the go with me, taking his sisters here and there,” she said at the time.
Two years later, Lucas still is alive and doing better than expected. Reflecting back on her pregnancy, Maria told the local news that she thought they would have “just a few minutes to hold him. Now, we’ve already got two years.”
Neither the doctors nor the family are sure how long Lucas will live, but family continues to hope.
“I never found hopeful stories when I was looking, so I want our story out there,” his mother said. “Nothing was expected of this child, and now here we are. I want everyone to know that miracles do happen.”