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San Antonio – Physicians work to establish a diagnosis and care plan for a baby who has spent the first three months of life in hospital after being born skinless.
Jaar Gray has been hospitalized since his birth on January 1 at the San Antonio Methodist Hospital, San Antonio Express-News reported. Most of his skin was missing, with the exception of his head, he was initially diagnosed with aplasia, a rare congenital absence of skin.
After being transferred to Texas Children's Hospital Houston Friday, specialists have epidemolysis bullosa, a rare genetic connective tissue disorder that makes the skin extremely fragile and prone to blisters and even tears, have been epidemically diagnosed. in case of friction or minor trauma.
Jaar has now skin on the head and others on the legs but not on the arms or on the torso. He is therefore treated with frequent dressing changes and ointments intended to stave off the infection, said his mother, Priscilla Maldonado.
"They are really focused on being comfortable now," she told San Antonio Express-News.
A spokeswoman for Texas Children's told CBS News that the baby Ja Bari was in a "critical" state. Citing the HIPPA privacy laws, the hospital said it could not say more about the patient's health.
Maldonado said that she and her husband, Marvin Gray, were undergoing genetic tests to confirm the diagnosis, as this disease is hereditary.
"It could take two to three weeks to get 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 and 6, who stay at Maldonado's mother's house while the couple watches over their baby.
"I've been able to hold it twice, but you have to be dressed in a dress and put on gloves.This is not skin-to-skin, it's not the same." "said Maldonado.
Doctors plan to perform surgery to cut scar tissue that fuses the chin of bari in the chest. His eyes have been fused since birth. According to Maldonado, Medicaid takes care of part of the child's medical expenses. The family receives help from Taco Cabana, which employs both parents. There is also a GoFundMe account configured.
Maldonado said the doctors had not specified how much longer Jaar should stay in the hospital.
"Even if he succeeds, we do not know what the future holds," said the mother. "We only pray every day, every day is a blessing."
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