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Texas doctors are using to find the causes of a baby without the majority of his skin.
The little Jaar Gray, born on New Year's Day in San Antonio, is in a stable state Tuesday, but Texas Children's Hospital Houston specialists are trying to understand the cause of his condition in order to better to heal him. the San Antonio Express-News reported.
"We want to find an answer now, but everything is in the air," said mother Priscilla Maldonado. "They are really focused on keeping him comfortable now."
The 3-month-old child has skin on the torso and arms but has it on his head and legs. Doctors initially thought that he was suffering perhaps from a rare condition called Aplasia Cutis.
But on Monday, specialists said he may be suffering from epidermolysis bullosa, a rare genetic connective tissue disorder that affects only 20 out of a million newborns in the United States. There is no cure, but the disease can be managed with pain medication and other measures.
The baby's parents, Maldonado, 25, and her husband, Marvin Gray, 34, are currently undergoing genetic testing to find out.
"It could take two to three weeks before they get an answer," Maldonado said. "They do not want to treat my son for the wrong thing."
For the moment, Ja'bari, who weighed only 3 kilograms at birth, is being treated with painkillers, topical ointments and frequent dressing changes, her mother said. He now weighs 8 pounds and is fed by a tube in his nose.
"He spent his whole life in the hospital," said Maldonado. "I was able to hold it twice, but you have to wear a dress and wear gloves. It's not skin-to-skin. It's not the same thing. "
The family also did not receive specialized treatment after Medicaid officials said they would not cover the transfer to the children's hospital. The officials canceled their decision after media coverage of the family's fate, according to Express-News.
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