This situation can occur after, for example, a heart attack or stroke. Brain death occurs when a critically ill patient dies sometime after being placed on life support. “Thanks to God we got so much more than that.Brain death is not the same as coma, because someone in a coma is unconscious but still alive. “Moms always say, ‘Even if we had him for five minutes, it was all worth it,’” she said. It’s hope, she said, for parents of children who’ve received diagnoses that seem insurmountable. She never dreamed she’d know Lucas like this. “Every time I see him, it’s just so encouraging.”įor now, Santa Maria is just enjoying the time she’s spent with her son. “Lucas is going to be with me for a long time,” Vogel said. Vogel will continue to work with Lucas as he grows to help foster his neurodevelopment and protect his brain. “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.” “I think he’s exceeded our expectations,” he said. They’re all signs that Lucas is developing on par with other children his age, Vogel said. He eats cereal and baby food, goes to physical therapy and coos to his mother when he’s awake. Courtesy North Jersey Brain & Spine CenterĪt 7 months old, Lucas has recovered remarkably. Lucas, seen here with parents Augusto and Maria Santa Maria, is developing much like other children his age, Dr. Seven months later, Lucas is eating and cooing The surgery went well, and he was sent home a few weeks later – weeks longer than he was expected to survive. But the Santa Marias decided the potential reward outweighed the risk.Īfter four days of convincing hospital staff to allow the procedure, Vogel was given the OK to operate on Lucas. The procedure had never been done before. The procedure would reduce his likelihood of seizures and further brain damage, too. If Vogel removed the damaged part of Lucas’ brain, he said, the functioning part could reassign the damaged area’s duties. Luckily, young children have a high capacity for neuroplasticity, or the brain’s ability to adapt to change and relearn. Half of Lucas’ basal ganglia, the part of the brain responsible for sensory-motor integration, hadn’t formed correctly, but the other half had, and was protected. “If he goes home and this fluid sac ruptures, that would be unsurvivable,” Vogel told CNN. If he could stabilize Lucas and what looked like a water balloon on top of his head, the Santa Marias could bring their son home. Tim Vogel, director of pediatric neurosurgery at the North Jersey Brain and Spine Center, suggested surgery. The Santa Marias started to consider the possibility that their son might live. He’d already been alive longer than any other child born with exencephaly. Her husband Augusto called a funeral home to make arrangements.īut hours passed, and Lucas was breathing on his own. Santa Maria’s three young daughters visited their mother in the delivery room, where doctors explained that the baby brother they just met would soon die. So when her son, who she named Lucas, was born, the Santa Marias braced for grief. Courtesy North Jersey Brain & Spine Center He underwent surgery four days after he was born. Lucas lived for hours, then days, surprising doctors. Santa Maria’s physicians gave her the option to abort her baby or, if he was born alive, spend a few minutes with him before his death. Her son defied odds and lived past his birth Previously reported cases of babies diagnosed with exencephaly have ended in death. The brain typically drives skull growth, but with part of the skull missing, the brain often grows in the path of least resistance, which can damage its function. Her son has exencephaly, a rare condition in which a child’s skull isn’t fully formed, so the uncovered brain is exposed to amniotic fluid inside the uterus. “They always said there was no possibility of him making it,” she said. Doctors told her there was no hope for his survival. The crushing diagnosis came during Santa Maria’s first ultrasound: Part of her baby’s skull was missing. He’s the only baby known to survive his diagnosis. But in the first few weeks of her most recent pregnancy, her baby was diagnosed with a rare cranial condition that is almost certainly fatal.īut now her son is 7 months old and living at home. The mother of three girls from Garfield, New Jersey, had previously given birth without complications. Maria Santa Maria was told she would never spend more than a few minutes with her son.
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