Priscilla Maldonado Gray and her husband, Marvin Gray, spent most of 2018 excited to welcome a third child into their brood. On January 1, 2019, their son Ja'bari made his grand entrance — but within moments, the couple could tell something was terribly wrong.
The tone in the delivery room immediately shifted, Priscilla says, as doctors fell "completely silent."
“You expect people to be happy after you have a baby," she later told News 4 San Antonio, "and I had no idea until they put me in a room and explained what was going on. I was just confused [and] lost. I didn’t know what was going on [or] what was going to happen."
Ja'bari, the couple would soon learn, was born with a rare skin condition that left him skin only on his head and legs.
In addition to weighing just 3 lbs., his eyes were fused shut and his chin was fused to his chest, which left him with a damaged airway. In fact, his condition is so rare, his doctors say they've never seen it before.
The news shocked the couple, who say that the pregnancy was completely normal. Although Priscilla did have to be induced at 37 weeks after Ja'bari's growth had slowed, doctors never alerted them to an issue of any kind.
And they certainly didn't think their baby would be born fighting for his life.
Making matters even more terrifying is that doctors aren't quite sure how to treat the infant's condition.
"They don’t know how to treat it," Priscilla told the news program. "They’re treating it as burns."
And so, the infant has remained in the NICU for the last three months, with the help of life support. Yet as recently as last week, the Grays were told he may not make it.
"Now it came down to where they just want us to go ahead and disconnect him when we feel comfortable because he's in too much pain and suffering right now," the mother shared with News 4. "I just want my baby to be home and be normal and be able to hold your baby."
The couple has since been able to transfer Ja'bari from Methodist Hospital to Texas Children's Hospital in Houston, where he's receiving specialized treatment. But that was only after waging a considerable fight with Medicaid, which first denied the transfer, and after considerable media coverage.
“Someone told me somebody in the government got involved, but I don’t know who,” Prescilla told Express News.
Even so, a lot of questions still loom, and even though Ja'bari is reportedly stable, his future is still uncertain.
“We want to find an answer right now, but everything is in the air,” Priscilla told San Antonio Express News this week. “They’re just really focused on keeping him comfortable right now.”
Initially, doctors at Methodist Hospital told the Grays that their son was likely suffering from Aplasia Cutis, a rare congenital condition characterized by the absence of skin, according to the National Center for Advancing Translational Sciences. But specialists at Texas Children's now believe Ja'bari is suffering from something else entirely — Epidermolysis bullosa, a rare genetic connective tissue disorder that occurs in just 20 newborns for every 1 million live births in the US, Express News reports.
Priscilla has since set up a GoFundMe page asking for prayers, as well as any support in paying Ja'bari's mounting medical bills.
On the page, she shares that her son has passed away twice but been revived by doctors. And even though she's been told the outlook is grim, she is still hanging on to the hope that her little fighter is going to make it.
"It has been very hard for us as a family," she writes. "It's hard to go to work just worrying about Ja'bari's health and … [hoping he doesn't] stop breathing. Each and every day is a blessing that he is still fighting to live on this Earth, and [a] donation big or small will be such a blessing to us."
Here's hoping this sweet family gets the happy ending they deserve.
