SEVERE WX : Red Flag Warning - Heat Advisory View Alerts
STREAMING NOW: Watch Now

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 know to survive this condition.

Posted: Oct 2, 2019 3:39 AM
Updated: Oct 2, 2019 5:45 AM


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 seven 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 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.

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 seven 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.'

Oregon Coronavirus Cases

Data is updated nightly.

Cases: 219755

Reported Deaths: 2858
CountyCasesDeaths
Multnomah41855618
Washington27838258
Marion24509333
Clackamas19964242
Lane14885174
Jackson12709156
Deschutes1056587
Umatilla958794
Linn627782
Yamhill507481
Klamath494479
Douglas451888
Polk431457
Josephine416975
Malheur366667
Benton347422
Jefferson249942
Coos231939
Columbia208732
Union169424
Wasco156131
Lincoln154422
Crook139924
Hood River126734
Morrow122917
Clatsop117610
Baker111517
Curry79112
Tillamook7605
Grant5637
Lake4868
Harney46011
Wallowa2396
Gilliam871
Sherman872
Wheeler441
Unassigned00

California Coronavirus Cases

Data is updated nightly.

Cases: 3966943

Reported Deaths: 64429
CountyCasesDeaths
Los Angeles130334324691
Riverside3085464662
San Bernardino3067695240
San Diego2980023798
Orange2824265144
Santa Clara1234042099
Sacramento1157321781
Kern1132161425
Fresno1046391746
Alameda971211286
Ventura838691044
Contra Costa77708834
San Joaquin769151460
Stanislaus658931095
Tulare50409854
San Mateo44622588
Monterey44523528
San Francisco40544563
Solano36004263
Santa Barbara35741467
Merced33321485
Sonoma32880330
Imperial29164745
Placer25146307
Kings23765251
San Luis Obispo21970265
Madera17058249
Santa Cruz16616207
Marin14958239
Yolo14863215
Butte13235205
Shasta13043242
El Dorado11125120
Napa1044282
Sutter10203127
Yuba700450
San Benito628263
Tehama589266
Lassen588826
Nevada541675
Humboldt511453
Mendocino471052
Tuolumne453573
Lake423866
Amador387748
Siskiyou256640
Glenn246527
Colusa235718
Calaveras231658
Del Norte16688
Inyo147338
Mono13265
Plumas7726
Modoc5767
Mariposa5007
Trinity4676
Sierra1310
Alpine890
Unassigned660
Medford
Clear
82° wxIcon
Hi: 95° Lo: 61°
Feels Like: 82°
Brookings
Partly Cloudy
52° wxIcon
Hi: 75° Lo: 56°
Feels Like: 52°
Crater Lake
Partly Cloudy
82° wxIcon
Hi: 79° Lo: 54°
Feels Like: 82°
Grants Pass
Partly Cloudy
82° wxIcon
Hi: 102° Lo: 63°
Feels Like: 82°
Klamath Falls
Clear
80° wxIcon
Hi: 91° Lo: 59°
Feels Like: 79°
Drier, but still hot, on Monday
KDRV Radar
KDRV Fire Danger
KDRV Weather Cam

Community Events

Latest Video

Image

Health Watch: Sports Physicals

Image

Monday, August 2 morning weather

Image

Sunday, August 1st Weather

Image

Sunday, August 1st Weather

Image

Dick Fosbury and the 'Fosbury Flop'

Image

Saturday, July 31st Weather

Image

Health experts' covid vaccine recommendations for pregnant women

Image

Umpqua Bank Robbery Investigation

Image

Saturday, July 31st Weather

Image

Friday, July 30th Overnight Weather