Almost a year after Ja’bari Gray arrived into the world without skin in most places on his tiny body, he’s finally home.
The baby has healed well with the help of lab-grown skin grafts and was released from Texas Children’s Hospital in Houston on Nov. 13.
Though he still has more surgeries ahead of him, his mother Priscilla Maldonado described his condition as "perfect" and said it was amazing to have him home.
"I'm overwhelmed with happiness," Maldonado, 25, who lives in Houston, told TODAY. "Everything is going fine. It's working out a lot better than I expected."
Ja’bari was supposed to be released from the hospital in October, but doctors decided to delay his discharge until he was completely weaned off pain medication, Maldonado said.
A team of multidisciplinary experts including plastic surgeons, otolaryngologists, ophthalmologists, neonatologists, critical care physicians and dermatologists have been working together to care for the baby's complex needs, said Lindsey Fox, a spokeswoman for Texas Children's Hospital.
"Though Ja'bari will require additional care in the future, we are glad he is able to go home with his family," she noted in a statement. The hospital declined to make a doctor available for an interview.
Maldonado has finally been enjoying bonding experiences most new moms get to experience right after birth: skin-to-skin contact, cuddles and kisses. Last week, the baby enjoyed his first "official" bath in a little tub after months of sponge baths at the hospital.
Ja’bari seems really happy when his mom holds him, making contented cooing noises, she added.
Before coming home this month, the baby had 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 17 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 was transferred there in 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. The grafts have completely healed and he has been breathing on his own since his breathing tube was removed in September. He continues to be fed via a gastrostomy tube in his stomach. Medicaid is covering the baby's medical bills.
The G-tube is the only additional care he needs — otherwise, it's like caring for a typical baby, Maldonado noted. She received training at the hospital on how to clean the feeding tube and how to put it back in if it comes out.
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 none of the problems are life-threatening, so Maldonado has been more optimistic about his recovery.
“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.”