Ja’bari Gray was released from Texas Children’s Hospital on Wednesday, Nov. 13, the baby born without skin, and will be able to go home with his family for the first time.
There were serious doubts as to whether the boy would survive, but now he has grown from 3 pounds at birth to nearly 18 pounds and seems to be living up to his name, meaning in Swahili “fighter” or “valiant.”
Ja’bari was born in San Antonio, Texas, on Jan. 1, 2019, at 37 weeks into Priscilla Maldonado’s pregnancy, through an emergency cesarean section. The ultrasound showed that he did not gain weight and that his heart rate had dropped.
Later that day, when Maldonado finally got a glimpse of the boy at the NICU, 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 on his body, including his chest, back, shoulders, and arms were not.
“It was just red. Bright red,” Maldonado recalled of seeing his uncovered flesh. “You could see all his veins (through it), everything was exposed.”
He required a tube for ventilation, medicine for pain, and complicated treatment. His eyes were closed and his chin had fused to his chest over time.
Doctors in San Antonio wanted to disconnect him from life support, Maldonado said, but she fought to have him moved to another hospital. The only one to take him was Texas Children’s Hospital in Houston, she noted.
Following his move to Texas Children’s Hospital in April, a multidisciplinary group of specialists, including plastic surgeons, otolaryngologists, ophthalmologists, neonatologists, critical care doctors, and dermatologists, has worked together to meet his complex needs.
Ja’bari underwent surgery in May to put skin grafts on his body’s exposed wounds, and his breathing tube was removed in September, allowing him to breathe freely, something that did not seem possible at first.
Ja’bari will need more surgery, including on his arms, his right hand and his right foot. After two surgeries, his eyelids fused shut again, so they may need another procedure. But Maldonado is now more optimistic about his recovery and preparing for Ja’bari’s arrival at her Houston home later this month. A special stroller, a crib, a bath, and a car seat will be needed.
“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.”
While nearly 1-year-old Ja’bari will still need health care in the future, his parents and those following his story over the past six months are grateful that Texas Children’s Hospital has been able to treat his condition and send him home safely.