Baby Born With Rare Skin Condition Denied Transfer to Specialized Facility
By Consumers For Quality Care, on April 23, 2019
Priscilla Maldonado thought she was having a healthy baby boy after an uneventful pregnancy. But when she gave birth to her son, Ja’bari Gray, at Methodist Hospital in San Antonio on New Years Day, doctors quickly realized that something was wrong, according to News 4 San Antonio. Gray was born without skin from his neck down, due to a rare skin disease called Aplasia Cutis. Maldonado fought her insurance company to get her son transferred to the Texas Children’s Hospital in Houston. She was told that the physicians at TCH could treat the rare condition, while her the current hospital was unequipped. However, Medicaid told her that TCH was out-of-network and denied the transfer.
"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," said Maldonado.Maldonado says that Gray was already defying the odds of his disease and that she wants to give him the best chance he has to survive. The doctors at Methodist Hospital put him on life support and told Maldonado that there was nothing else they could do.
"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 said. "I just want my baby to be home and be normal and be able to hold your baby."With her insurance denying the transfer, Maldonado prepared to change her insurance coverage. The change could take up to 45 days, she noted. Luckily for Gray and his parents, he was transferred to TCH on April 19, San Antonio Express News reports. Medicaid reversed its decision on Gray’s transfer after publicity on his case. Maldonado says she was told someone in the government got involved. Now at the Texas Children’s Hospital, Gray is receiving more specialized care. The doctors are working to treat the rare condition, but believe it might be something other than the original diagnosis of Aplasia Curtis. Maldonado says a whole team of specialists came to Gray’s room to explain the treatment plan to her husband and her. The couple is not sure what the future will hold for Gray. But they are happy that he is in a place he can get the most specialized care possible.
“We’re just praying every day. Every day is a blessing.”