Baby Born Without Skin Will Receive Life-Saving Care After Being Denied Hospital Transfer
April 12, 2019
A baby born without skin from the neck down, who had initially been denied the life-saving care he needs by Medicaid, is being transferred to Texas Children’s Hospital in Houston. Three-month-old Ja’bari Gray was born with Aplasia Cutis, a rare condition in which there is congenital (present from birth) absence of skin, with or without the absence of underlying structures such as bone. According to News 4 San Antonio, his mother Priscilla Maldonado, said she was told he could be treated at the children's hospital, but Medicaid said the hospital was “out of network” and that it wouldn’t cover the transfer or stay. Thankfully, that all changed today, according to a new report from News 4.
According to family members, Medicaid and hospital officials were inundated with complaints following the station's first story about Ja'bari. Maldonaldo said the transfer could happen soon.
“Lost, confused, hurt, you know, it’s a child’s life that’s on the line. It should be no questions asked. It should be approved how it is,” Maldonado previously told News 4. “From day one, they said he had no chance of surviving, and I would hate to give up or everybody else to give up on him when he’s made it this far in life.”
RELATED: Parents of a Boy Battling a Rare, Debilitating Skin Disease Are Raising Money to Save His Life
Maldonaldo says that she had a normal pregnancy, but it was upon Ja’bari's arrival that doctors confirmed his diagnosis. “They don’t know how to treat it,” Maldonado said. “They’re treating it as burns.”
Up until this transfer was approved, the little boy had been on life support. "Now it came down to where they just want us to go ahead and disconnect him when we feel comfortable, because he’s in too much pain and suffering right now,” Maldonado explained. “I just want my baby to be home and be normal and be able to hold my baby.”
According to the National Institutes of Health, the best treatment for the condition varies from case to case. Conservative treatment—such as gentle cleansing and application of bland ointments or silver sulfadiazine can help prevent infection. There are specialized dressing materials. Larger surfaces of missing skin might require surgery. They conclude, "Ultimately, the decision to use medical, surgical, or both forms of therapy depends primarily on the size, depth, and location of the skin defect."
If you want to support baby Ja'bari, you can donate to the family's GoFundMe page, which has raised just over $14K of its $20K goal.
