Little Ja’bari Grey, who was born on New Year’s Day in San Antonio, was in stable condition as of Tuesday, but specialists at the Texas Children’s Hospital in Houston are trying to understand the cause of his condition so they can better treat him, the San Antonio Express-News reported.
“We want to find an answer right now, but everything is in the air,” said mother Priscilla Maldonado. “They’re just really focused on keeping him comfortable right now.”
The 3-month-old is missing his skin on his torso and arms but has some on his head and legs. Doctors first believed he may have a rare condition called Aplasia Cutis.
But on Monday, specialists said he may be actually be suffering from Epidermolysis bullosa, a rare genetic connective tissue disorder that affects only 20 newborns out of 1 million in the US. There is no cure but the disease can be managed with pain pills and other measures.
The baby’s parents Maldonado, 25, and her husband Marvin Grey, 34, are undergoing genetic testing to know for sure.
“It could be two to three weeks before they have an answer,” said Maldonado. “They don’t want to treat my son for the wrong thing.”
For now, Ja’bari, who weighed only 3 pounds at birth, is being treated with pain medication, topical ointments and frequent dressing changes, his mother said. He now weighs 8 pounds and is being fed through a tube in his nose.
“He’s been in the hospital his whole life,” said Maldonado. “I’ve been able to hold him twice, but you have to be dressed in a gown and gloved-up. It’s not skin-to-skin. It’s not the same.”
The family also didn’t receive the specialized treatment after Medicaid officials said they wouldn’t cover the transfer to the Children’s Hospital. Officials reversed their decision after media coverage of the family’s plight, according to the Express-News.