Almost a year after Ja’bari Gray arrived into the world without skin in most places on his tiny body, he’s finally going home.
The baby has healed well with the help of lab-grown skin grafts and will be released from Texas Children’s Hospital in Houston on Oct. 27, his mother Priscilla Maldonado said.
As she counted down the days to his homecoming, she was finally enjoying bonding experiences most new moms get to experience right after birth: skin-to-skin contact, cuddles and kisses.
“It’s amazing. It’s about time,” Maldonado, 25, told TODAY as she was holding her son at the hospital. “It’s beyond words. I can’t describe it.”
Ja’bari seems really happy when she holds him, making contented cooing noises, she added. He can finally wear onesies and socks, though he still can’t wear bottoms because of an IV in his legs.
The baby has spent his entire life so far in the neonatal intensive care unit.
There were serious doubts whether the boy would survive, but he has grown from 3 pounds at birth to almost 18 pounds now and seems to be living up to his name, which means “fighter” or “valiant” in Swahili.
Ja’bari was born in San Antonio, Texas, on Jan. 1, 2019, via an emergency cesarean section at 37 weeks into Maldonado’s pregnancy. An ultrasound showed he wasn't gaining weight and his heart rate was dropping.
Maldonado, who has two other children, remembers it was eerily quiet during the delivery and she didn't hear a baby cry.
When she was finally able to get a glimpse of the boy in the NICU later that day, Ja’bari was covered in dressings to keep his body protected and moisturized. He had skin on his head, face and parts of his legs, but it was missing in many other places on his body, including his chest, back, shoulders and arms.
“It was just red. Bright red,” Maldonado recalled of seeing his uncovered flesh when she talked with TODAY in July. “You could see all his veins (through it), everything was exposed.”
He required a breathing tube, pain medication and complex care. His eyes were fused shut and, over time, his chin fused to his chest.
Doctors in San Antonio wanted to disconnect him from life support, Maldonado said, but she fought to have him transferred to another facility. Texas Children’s Hospital in Houston was the only one that would take him, she noted.
Ja’bari has been there since April. In May, special skin grafts were applied to the baby’s body. The sheets of skin were grown by a biopharmaceutical company in Massachusetts, the San Antonio Express-News reported. Cells from a biopsy of skin behind the baby’s ear were sent to the company and then grown in a lab, Maldonado said. Doctors then covered his neck, chest, back and right arm with the grafts.
“They used 12 trays (of skin),” she noted.
The surgery was a success and Ja’bari is now 100% covered with skin, Maldonado said. He’s been off pain medications for almost a month and has been breathing on his own since his breathing tube was removed three weeks ago. He continues to be fed via a gastrostomy tube in his stomach.
Ja’bari is currently listed in fair condition, said Lindsey Fox, a spokeswoman for Texas Children's Hospital, which declined to make a doctor available for an interview. A multidisciplinary team of experts has been working together to care for Ja’bari Gray’s complex needs, the hospital said in an earlier statement.
The baby’s condition is called aplasia cutis, a term that simply describes the absence of skin, but doctors still don’t know what caused it, Maldonado said.
Ja’bari will have to have more surgeries on his arms, his right hand and right foot. His eyelids have fused shut again after two surgeries to open them, so they may require another procedure. But Maldonado is more optimistic about his recovery now and preparing her Houston home for Ja’bari’s arrival later this month. He’ll need a special stroller, crib, bathtub and car seat.
“It feels like having a baby all over again — actually being able to take the baby home,” she said. “It’s like a dream come true, finally.”