At seven months Lucas is eating and cooing to his mother
By Dave Andrusko
Probably every mom believes her baby is one of a kind. In the case of Maria Santa Maria’s son Lucas, however, it’s literally true.
Lucas, now seven months old and living at home, is the only baby known to survive his diagnosis of exencephaly
Already the mother of three girls, the “crushing diagnosis” for her came during her first ultrasound at 10 weeks, Scottie Andrew reported.
Part of her baby’s skull was missing. Doctors told her there was no hope for his survival.
“They always said there was no possibility of him making it,” she said. “I did feel like I was losing him.”
Her son had 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. 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.
Previously reported cases of babies diagnosed with exencephaly have ended in death.
Andrew reports that doctors offered the “option” of abortion. She was told her only other option was to carry her baby to term and, if he was born alive,
spend a few minutes with him before his death.
She chose the latter.
When Lucas was born, the family was prepared for grief. “When we were in the delivery room because I wanted them [his three sisters] 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 told Toni Yates of ABC7.
But hours passed, and Lucas was breathing on his own. He was eating. He’d already been alive longer than any other child born with exencephaly.
[Dr. Tim] Vogel said Lucas was otherwise a healthy baby. With the family’s blessing, he gave the infant a chance by closing the skin around his exposed brain tissue.
But that was just a place holding action. To save Lucas, surgery was required, surgery of a kind that had not ever been performed before.
The director of pediatric neurosurgery at the North Jersey Brain and Spine Center, Vogel hypothesized, “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,” Andrew explained. “If he goes home and this fluid sac ruptures, that would be unsurvivable,” Vogel told CNN.
But the brain’s ability to adapt to change and relearn—neuroplasticity—is highly advanced in children. The blessing was that while half of Lucas’ basal ganglia, hadn’t formed correctly, the other half had. And was protected, Andrew writes.
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.
After four days of convincing hospital staff to allow the procedure, Vogel was given the OK to operate on Lucas. The surgery went well, and he was sent home a few weeks later — weeks longer than he was expected to survive.
The rest is (pleasant and encouraging) history. At seven months, all signs are that Lucas is developmentally on schedule. “He eats cereal and baby food, goes to physical therapy and coos to his mother when he’s awake,” Andrew writes.
“I think he’s exceeded our expectations,” [Dr. Vogel] 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.”
Vogel will continue to work with Lucas as he grows to help foster his neurodevelopment and protect his brain.
“Lucas is going to be with me for a long time,” Vogel said. “Every time I see him, it’s just so encouraging.”
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