Mother's Moment of Joy Turns Into Horror

Little Ja'bari was born mostly without skin
By Neal Colgrass,  Newser Staff
Posted Apr 20, 2019 3:00 PM CDT

(Newser) – Priscilla Maldonado was robbed of a joyous New Year's Day moment—and things have hardly gotten easier. The 25-year-old Texas mom had just given birth to her son Ja'bari at Methodist Hospital in San Antonio when the delivery room fell silent and her newborn was rushed away. "I was worried," she tells the Washington Post. "I was confused." She soon saw her heavily-bandaged son connected to wires and tubes in ICU, where doctors said he had been born without skin on his hands, feet, back, arms, chest, and neck. Diagnosis: aplasia cutis congenita, a condition that leaves babies without skin and sometimes underlying bone structure. Maldonado and her husband, Marvin Gray, were told to take Ja'bari home and let him pass away. "I felt lost," she says.

But Ja'bari was transferred last week to Texas Children's Hospital in Houston and given a new diagnosis, epidermolysis bullosa—a rare genetic disorder that makes skin fragile and turns even small injuries into erosions and blisters. Medicaid initially said insurance wouldn't cover the hospital transfer but changed its decision after media coverage intensified, per the San Antonio Express-News. While Ja'bari is expected to live, one expert says he faces "a very challenging life" that includes surgeries and "disfigurement." Indeed, the three-month-old's eyes are still closed and his fingers and toes remain fused. But the Maldonados, who work at a San Antonio fast food restaurant, say they're praying every day and have a GoFundMe account at nearly $80,000, per People. They will fight for Ja'bari "until the end," says Priscilla. "Until he gives up." (Read more newborn stories.)

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