A baby born with no skin has fought through his harrowing odds and he’s still winning. Although his parents had wondered if they should plan his funeral, Ja’bari Gray finally left the hospital to go home eleven months after being born.
Ja’bari was born on January 1, 2019, with skin only covering his legs and head. This condition is called Epidermolysis bullosa, and it’s a connective tissue disorder that is found in only 20 newborn babies out of a million in the United States. Many of these infants die as the blistering inhibits their abilities to eat or even breathe. 
During the first few weeks of living, Ja’bari was medically dead twice, but the doctors were able to revive him. His parents, residents of Houston, Texas, prepared for the worst. Priscilla Maldonado, his mother, 25, admitted that was she planning to organize the baby’s funeral.
Eleven months later, she was “overwhelmed with happiness” to bring Ja’bari home.
“Everything is going fine. It’s working out a lot better than I expected,” she said. “At three months of age we were planning a funeral; they (medics) gave him no chance, like, at all, and for him to jump that whole hurdle, they were amazed.” 
A Child Born Without Skin
When he was born, Ja’bari weighed only three pounds and had no skin from his neck, across his arms, to his thighs. Not only that, but he wasn’t completely developed, with eyes fused shut and his neck attached to his chest. His arms were fused over his bent elbows, and his fingers and toes weren’t fully formed. The doctors had to jump into surgery to stop any part of the body from further fusion.
“It was just red. Bright red,” Priscilla said about seeing flesh for the first time. “You could see all his veins (through it), everything was exposed.” 
Just after delivery, there was quiet where there should have been a baby’s cry.
To treat him, they used his cells to create growing sheets of skin — a process often used to treat burn victims. The baby underwent two major skin graft surgeries and another operation that was unsuccessful in opening his eyes.
A team of experts including plastic surgeons, dermatologists, otolaryngologists, neonatologists, critical care physicians, ophthalmologists, and neonatologists worked together to care for the baby’s complex needs, according to Lindsey Fox, a spokeswoman for Texas Children’s Hospital. She adds that although he’s able to go home, he will require more treatment moving forward.
Switching to a New Hospital
The mother had opened a GoFundMe page when her medical insurance couldn’t cover Ja’bari’s transfer to a hospital for better treatment. The hospital he was born at, Methodist Children’s Hospital, said there was nothing they could do for the baby. They even wanted to take him off life support, but his mother fought to have him transferred to another hospital
On the website, she described the terrifying experience in detail. “My whole time being pregnant everything was going good then an ultrasound showed that he wasn’t gaining weight so they decided to induce me at 37 weeks.
“When I went in the morning to get induced his heart rate was dropping so they end up doing an emergency c section, once they got him out they noticed he was born without his skin his eyes are fused shut which will require surgery to open them.
“He was born at 3 pounds. He is requiring a breathing machine that is breathing for him, he has past away twice and the doctors have brought him back. The skin disorder he has is so very rare that no doctor has ever seen it before and is very hard to treat with little to no info at all.”
“It’s Like a Dream Come True”
The successful fundraiser enabled Ja’bari be transferred to Texas Children’s Hospital where he received his life-saving treatment. He is now completely covered with skin and able to breathe on his own.
“It feels like having a baby all over again — actually being able to take the baby home,” Priscilla said. “It’s like a dream come true, finally.”
Ja’bari’s name means “fighter” or “valiant” in Swahili and it’s very fitting. Priscilla is overjoyed to have home where he could wear proper baby clothes for the first time. The infant has even began blowing bubbles.
They were able to celebrate his first birthday at home with a Baby Shark-themed party. It was more than just a birthday. It was a celebration of his life so far, and all that he, his parents, and his doctors had done to fight for it.  His second birthday is just around the corner!
- ” Epidermolysis bullosa.” Mayo Clinic. July 29, 2020
- ” Baby born without skin who ‘died twice’ goes home months after mum planned funeral.” Abigail O’Leary. Mirror. November 21, 2019.
- ” Baby born without skin in Texas released from hospital.” A. Pawlowski. Today. November 18, 2019
- ” Texas Baby Born Without Skin Celebrates First Birthday on New Year’s Day.” Maria Pasquini. People. January 2, 2020