New Jersey mother Maria Santa Maria learned before her son’s birth that he had rare cranial condition called exencephaly. According to CNN, during an ultrasound early in pregnancy, doctors discovered that her son was missing part of his skull and told her that the condition is considered fatal. They told her he would die at birth.
Because there are no known cases of babies with exencephaly surviving birth, doctors offered to end her son’s life through abortion. Santa Maria chose to carry her son, whom she named Lucas, to term and spend every moment she could with him before he passed away.
Baby Lucas in the hospital. Screenshot WABC.
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“They always said there was no possibility of him making it,” Santa Maria said. “I did feel like I was losing him.” Her husband Augusto called the funeral home to make arrangements.
“They recommended abortion, so that’s not what I wanted to do,” she told WTOC 11.
When Lucas was born, Santa Maria and her family were prepared to mourn him. However, Lucas continued to live for hours, breathing on his own and eating. Santa Maria began to realize that her son might live.
Baby Lucas at home. Screenshot WABC.
Dr. Tim Vogel, director of pediatric neurosurgery at the North Jersey Brain and Spine Center, suggested the family pursue surgery. Lucas’s brain was partially covered with a fluid-filled sac and unstable. As CNN reports:
Luckily, young children have a high capacity for neuroplasticity, or the brain’s ability to adapt to change and relearn. If Vogel removed the damaged part of Lucas’ brain, he said, the functioning part could reassign the damaged area’s duties. The procedure would reduce his likelihood of seizures and further brain damage, too.
The procedure had never been done before. But the Santa Marias decided the potential reward outweighed the risk.
The surgery was remarkably successful, and Lucas was able to go home within weeks. Now, at seven months old, Lucas is eating, going to physical therapy, cooing at his mother, and attempting to crawl. The doctor who performed his life-saving surgery is amazed by his progress. “Lucas is going to be with me for a long time,” Vogel said. “Every time I see him, it’s just so encouraging.”
Santa Maria is grateful for the time she continues to enjoy with her son. “Moms always say, ‘Even if we had him for five minutes, it was all worth it,'” she said. “Thanks to God we got so much more than that.”
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