After seven months in the neonatal intensive care unit, a baby born without skin is improving, but his condition is still a mystery to doctors.
When Ja’bari Gray was born on Jan. 1, parents Priscilla Maldonado and Marvin Gray, along with their doctors, were shocked to discover that he was missing the majority of his skin.
“It was just red. Bright red,” Maldonado, 25, told Today. “You could see all his veins, everything was exposed.”
The baby had tested well through the pregnancy until an ultrasound at 37 weeks showed that he wasn’t gaining weight and his heart rate had dropped, which led doctors to perform an emergency C-section. Ja’bari came into the world “completely silent,” Maldonado previously told the San Antonio Express-News, a shock compared to the births of her first two children, and he weighed just 3 lbs.
With skin only on his head, face and parts of his legs and arms, doctors were unsure if Ja’bari would survive. His eyes were fused shut and he needed help breathing and pain medication. But now, seven months later, he is up to 14 lbs. and improving, thanks to extensive skin graft surgery at Texas Children’s Hospital in Houston.
In May, doctors started covering Ja’bari’s body with skin grown in a lab, from cells taken from the back of his ear.
“They used 12 trays [of skin],” Maldonado told Today.
In updates on their GoFundMe page, Maldonado said that Ja’bari is improving, and doctors are slowly lowering his pain medications in the hopes of sending him home in August. But they still do not know what caused him to be born without skin.
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Doctors originally thought that he may have epidermolysis bullosa, a group of rare skin disorders that causes fragile skin that blisters, but Maldonado and her husband underwent genetic testing and found they were not carriers for the condition.
With doctors still unsure about Ja’bari’s condition and his lengthy stay in the NICU, Maldonado has maintained their GoFundMe page to raise money for continued research and surgeries.
She says that “he’s doing completely better,” but she’s still concerned that doctors have been unable to get his eyes open after two surgeries.
“I want my baby to be able to see,” Maldonado wrote in a GoFundMe update on July 13. “This isn’t fair.”