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A baby born with part of his skull missing beat the odds. He's the first with the condition to survive past birth

7-month-old Lucas Santa Maria was born with a rare cranial condition that left him missing a large piece of his skull. WABC's Toni Yates reports that Lucas is the only baby known to have survived this condition.

Posted: Oct 3, 2019 5:40 PM
Updated: Oct 3, 2019 5:40 PM

Maria Santa Maria was told she would never spend more than a few minutes with her son.

The mother of three girls from Garfield, New Jersey, had previously given birth without complications. 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.

But now her son is 7 months old and living at home. He's the only baby known to survive his diagnosis.

Her baby's condition is rare

The crushing diagnosis came during Santa Maria's first ultrasound: 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 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. 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.

Her son defied odds and lived past his birth

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. She chose the latter.

So when her son, who she named Lucas, was born, the Santa Marias braced for grief. 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. Her husband Augusto called a funeral home to make arrangements.

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.

The Santa Marias started to consider the possibility that their son might live.

A first-of-its-kind surgery saved him

That's when Dr. Tim Vogel, director of pediatric neurosurgery at the North Jersey Brain and Spine Center, suggested surgery. 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.

"If he goes home and this fluid sac ruptures, that would be unsurvivable," Vogel told CNN.

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.

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.

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.

Seven months later, Lucas is eating and cooing

At 7 months old, Lucas has recovered remarkably. He eats cereal and baby food, goes to physical therapy and coos to his mother when he's awake.

They're all signs that Lucas is developing on par with other children his age, Vogel said.

"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."

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."

For now, Santa Maria is just enjoying the time she's spent with her son. She never dreamed she'd know Lucas like this. It's hope, she said, for parents of children who've received diagnoses that seem insurmountable.

"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."

Mississippi Coronavirus Cases

Data is updated nightly.

Cases: 513622

Reported Deaths: 10264
CountyCasesDeaths
Harrison34892556
DeSoto33234432
Hinds32638641
Jackson24854389
Rankin22507403
Lee16337242
Madison14922283
Jones14113247
Forrest13766259
Lauderdale12270324
Lowndes11305193
Lamar10659140
Pearl River9719244
Lafayette8846143
Hancock7836132
Washington7550169
Oktibbeha7210138
Monroe7010179
Pontotoc6990109
Warren6863178
Panola6759134
Neshoba6730210
Marshall6678141
Bolivar6445151
Union638297
Pike5928156
Alcorn5879107
Lincoln5530136
George510180
Prentiss503884
Tippah491482
Itawamba4844107
Scott477899
Adams4768125
Tate4756116
Leflore4729144
Copiah456495
Yazoo456491
Simpson4546117
Wayne443072
Covington433695
Sunflower4299106
Marion4277112
Coahoma4237109
Leake413990
Newton395781
Tishomingo383593
Grenada3777109
Stone365866
Jasper340666
Attala338290
Winston317892
Chickasaw315467
Clay312278
Clarke301195
Calhoun285049
Holmes271889
Smith269052
Yalobusha243947
Tallahatchie231553
Greene224749
Walthall221666
Lawrence218740
Perry213456
Amite209857
Webster205348
Noxubee188742
Montgomery181657
Carroll174541
Jefferson Davis173643
Tunica163239
Benton152939
Kemper145041
Choctaw136727
Claiborne134338
Humphreys131239
Franklin125529
Quitman107628
Wilkinson105939
Jefferson96934
Sharkey65221
Issaquena1957
Unassigned00

Alabama Coronavirus Cases

Cases: 845284

Reported Deaths: 16116
CountyCasesDeaths
Jefferson1161552006
Mobile742111380
Madison53307732
Shelby38338368
Baldwin38085589
Tuscaloosa36022641
Montgomery34492781
Lee25562263
Calhoun22586518
Morgan22459406
Etowah20018517
Marshall18782316
Houston17731425
St. Clair16884358
Limestone16148218
Cullman16054303
Elmore15904294
Lauderdale14989306
Talladega14196299
DeKalb12972269
Walker12030380
Blount10717192
Autauga10517157
Jackson10162194
Coffee9417192
Colbert9342208
Dale9020191
Tallapoosa7256201
Russell708165
Chilton7018170
Escambia6957143
Covington6933195
Franklin6342108
Chambers5784142
Marion5406130
Dallas5285209
Pike5119109
Clarke484986
Lawrence4826129
Winston4780110
Geneva4642136
Bibb434094
Barbour369580
Butler3435100
Marengo342493
Monroe337266
Randolph334867
Pickens333188
Fayette330385
Henry320666
Hale318389
Cherokee317863
Crenshaw260477
Washington257052
Cleburne254460
Lamar251453
Clay250869
Macon244864
Conecuh192862
Coosa185047
Lowndes178168
Wilcox177438
Bullock152645
Perry141840
Sumter139241
Greene130245
Choctaw93228
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