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When Ja'bari Gray was born on New Year's Day in San Antonio, he lacked an organ that most people take for granted: his skin.
In the absence of this crucial barrier between her body and the world, the 3-month-old mother was not able to properly hug her, hug her, or kiss her.
The doctors in Houston, where the baby was transferred on April 12, are trying to understand the cause of Ja'bari's condition in order to better treat him. On Tuesday, the baby was stable and healthy.
"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 boy was born on January 1 at the Methodist Hospital with most of his missing skin, with the exception of his head and legs. Specialists at Texas Children's Hospital in Houston have more experience in treating rare skin conditions;
On Monday, they told Maldonado, 25, and her husband Marvin Gray, 34, that their son might have something other than Aplasia Cutis, the rare skin disease that Methodist medical staff had determined to be the cause of his skin.
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Houston doctors told him he may be suffering from epidermolysis bullosa, a rare genetic connective tissue disorder affecting only 20 newborns in a million live births in the United States.
EB is characterized by extremely fragile skin, with blisters and tears due to minor friction or trauma. There is no curative treatment, but the disease can be managed with pain medication, infection control and other measures.
To check if this is the cause of Ja'bari's disease, Maldonado, Gray and Ja'bari are currently undergoing genetic testing, as most forms of the disease are hereditary.
"It could take two to three weeks before they have an answer," said Maldonado, who, like his wife, works in a Taco Cabana in San Antonio. "They do not want to treat my son for the wrong thing."
Houston doctors treat Ja'bari, who weighed only three pounds at birth, with painkillers and frequent dressing changes, as well as topical ointments to reduce the risk of infection, Maldonado said. He now weighs 8 pounds and is fed by a tube inserted into his nose.
Maldonado said that a room filled with specialists had met Monday with her husband to discuss their son's treatment plan. A future surgery will involve making an incision in Ja'bari's throat to cut off the scar tissue that has caused his chin to melt with his chest. The eyelids of the baby are welded from birth.
"He spent his whole life in the hospital," said Maldonado, who works as a shift supervisor at the Mexican fast food restaurant. "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. "
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It is a treatment that the child has hardly received. Maldonado said that Medicaid officials told him that the insurance would not cover the transfer and treatment of Ja'bari to Texas Children because he was not connected to the network.
Medicaid then reversed its decision after considerable media coverage of the family's plight.
"Someone told me that someone in the government was involved, but I do not know who," Maldonado said.
She and her husband have two other children aged 5 and 6 years old. Maldonado had what appeared to be a normal and healthy pregnancy with Ja'bari. It was only when it came out of the womb that the doctors saw that something was really not going well.
In addition to his head, Ja'bari has skin on his legs, but not on his chest or arms.
Taco Cabana helps cover the couple's living expenses in a Houston hotel while their son is being treated. A gofundme account has been created. Maldonado, whose children are staying at his mother's home in San Antonio while their sick brother is being treated, said the family may have to move to Houston.
She said doctors can not tell them how long her son might need to stay in the hospital; Medicaid will not pay for all the specialized medical equipment and other care that her son will need.
"Even if it succeeds, we do not know what the future holds for us," she said. "We only pray every day. Every day is a blessing. "
Melissa Fletcher Stoeltje is a general journalist specializing in reporting. It covers news, cultural trends, interesting people and interesting events around San Antonio and Bexar County, as well as in South Texas. Read it on our free website, mySA.com, and on our subscriber site, ExpressNews.com. | [email protected] | Twitter: @mstoeltje
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