Baby Ja’bari Gray was born without skin from the neck down, a condition so rare that doctors at his hospital hadn’t seen it before. At first, it seemed like a hopeless situation. Now they are simply hoping to buy some time for the baby while in search of a long-term treatment.
Doctors think baby Ja’bari may be suffering from a rare genetic connective tissue disorder known as epidermolysis bullosa. It will take some time to confirm this from DNA samples taken from the parents. Initially, they were unsure of how to treat it.
“Even if he does pull through, we don’t know what the future holds,” said his mom Priscilla Gray. “We’re just praying every day. Every day is a blessing.”
UPDATE: Tomorrow is a big day for a little Ja'bari Gray, the baby born without skin.Doctors will be opening his eyes…
Little Ja’bari Gray came into the world three weeks early on Jan. 1, 2019, and weighed just 3 pounds (approx. 1 kg). According to a GoFundMe page set up by the family, doctors noticed in an ultrasound that he wasn’t putting on weight.
When Priscilla went into hospital at 37 weeks to be induced, her baby’s heart rate began dropping, and it suddenly turned into an emergency. After the baby came out, doctors saw that he only had skin on his head and legs, and his eyes were fused shut.
He required a breathing machine to breath for him and had to be revived twice. From day one, the mother was told that he wouldn’t survive. Yet, there was hope; the family located a special unit at the hospital where they were able to keep him alive.
BREAKING NEWS: Just one day after Medicaid denied a potentially life-saving medical transfer for a baby born without skin, the family of baby Ja'bari Gray says the insurance provider has decided to approve it.
Eventually, a biopsy of Ja’bari’s skin was sent to Vericel Corporation in Cambridge, Massachusetts, where his skin cells were used to create new skin, a treatment typically used for burn victims.
“They grow and divide, making a very thin sheet about four to eight cells thick across the bottom of the flasks that we grow them in,” said Dr. John Hopper, via Fox News. “We have 24 hours from when it leaves the controlled environment here in Cambridge to when it should be placed on the patient.”
His family are praying for their son and hoping he will recover and eventually be able to lead a normal life.
“His arms are still contracted, his hands, his foot fused together,” said Priscilla before the surgery. “I don’t want to come this far to him not to be able to be mobile. I want him to have his functions just like everybody else.”
UPDATE! "He's actually closing his mouth now. He's even alerting when he's hungry. We were noticing that he was smacking…
On Friday, May 24, Ja’bari underwent surgery at Texas Children’s Hospital. Skin created and grown from his own cells was grafted over the open wounds. It will take time to heal, so he will need ongoing specialist care, many skin grafts, and plastic surgery.
Doctors were also able to successfully open his eyes, which were also fused shut.
“I think that’s going to be one of the main things for him,” said Priscilla. “When his eyes are open, he gets to put the voices to the actual physical features together. It’s probably going to comfort him a lot more.”
The family is asking for prayers for their little fighter, as he still has a long road ahead of him.