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Santo António – Doctors are working for a diagnosis and plan of care for a baby who spent the first three months of his life in hospitals after he was born without skin.
Ja bari Gray has been hospitalized since his birth on January 1 at the Methodist Hospital in San Antonio, the San Antonio Express-News reported. With most of his skin missing, except in the head, he was initially diagnosed with aplasia cutis, a rare congenital absence of skin.
After he was transferred Friday to the Texas Children's Hospital in Houston, experts have tentatively diagnosed him with epidermolysis bullosa, a rare genetic disorder of connective tissue that leaves the skin extremely fragile and subject to even lower friction tears or tears. trauma.
Jae Bari now has skin on his head and some on his legs, but none on his arms or torso, so he is being treated with frequent dressings and ointments to ward off the infection, said his mother, Priscilla Maldonado.
"They're really focused on keeping you comfortable right now," she told the San Antonio Express-News.
A Texas Children's spokeswoman told CBS News that the baby Ja? Bari is in "critical" condition. Citing the privacy laws of HIPPA, the hospital said it could not comment further on the patient's health.
Maldonado said she and her husband, Marvin Gray, are undergoing genetic testing to confirm the diagnosis, since the disease is inherited.
"It may be two to three weeks before they have an answer. They do not want to treat my son for the wrong thing," Maldonado said.
She and Gray have two other children, ages 5 to 6, who stay with Maldonado's mother while the couple watches over their baby.
"I've been able to hold it twice, but you have to be dressed in a gown and gloved. It's not skin to skin, it's not the same," Maldonado said.
Doctors plan to have surgery to cut the healed tissue that is fusing Jaen's chin to the chest. His eyes have also been fused since birth. Medicaid is covering some of the child's medical expenses, Maldonado said, and the family is receiving help from Taco Cabana, which employs both parents. There is also a GoFundMe account set up.
Maldonado said the doctors did not say how long Ja? Bari will need to stay in the hospital.
"Even if he does, we do not know what the future holds," said his mother. "We are just praying every day. Every day is a blessing."
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