Doctors are scrambling to find the reason behind Ja'bari Grey's condition of being born without skin, and they believe genetic testing could provide the answer.
Texas Child Born With No Skin
Ja'bari was born on New Year's Day of 2019 at the Methodist Hospital in San Antonio, Texas.
According to San Antonio Express News, he was transferred to the Texas Children's Hospital in Houston, Texas, on April 12. In Houston, he would have access to specialists with more experience in treating rare skin conditions.
Without skin in most of his body other than his head and legs, the baby has spent the few months of his life so far confined in the hospital. To treat him properly, health professionals need to figure out what is causing his condition.
"We want to find an answer right now, but everything is in the air," mother Priscilla Maldonado explains to San Antonio Express News. "They're just really focused on keeping him comfortable right now."
Genetic Testing May Be The Key To Diagnosis
Last Monday, April 15, doctors told Maldonado, 25, and husband Marvin Grey, 34, that Ja'bari may be suffering from a rare genetic connective tissue disorder known as Epidermolysis bullosa.
Epidermolysis bullosa is a group of diseases causing the formation of painful blisters on the skin, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. It ranges in severity from patient to patient, with a number developing blisters inside the body as well.
It affects only 20 out of 1 million newborns in the United States.
To see whether this is driving Ja'bari's condition, the baby and his parents are undergoing genetic testing. Most forms of this illness are hereditary.
"It could be two to three weeks before they have an answer," Maldonado explains. "They don't want to treat my son for the wrong thing."
Treatment For Ja'bari
For now, the baby boy is getting pain medication, topical ointments, and frequent dressing changes at the Texas Children's Hospital.
A surgery that's been planned for him will cut scar tissue on his throat that has been fusing his chin to his chest. His eyelids has also been fused shut since he was born, as well as his fingers, a report from People reveals.
Medicaid insurance nearly did not cover Ja'bari's transfer and treatment because it was out of network, but officials reversed the decision following significant coverage of the story. Maldonado reveals that someone told her a person in the government stepped in, but she has no idea who it was.
A GoFundMe for the Texan family has been set up to help them as they seek the medication and treatment of Ja'bari. Without diagnosis yet, doctors still can't confirm how long the three-month-old is expected to stay in the hospital. Furthermore, Medicaid likely won't pay for all the equipment, care, and medication that Ja'bari will need for his treatment.
Epidermolysis bullosa has no known cure, but doctors can manage it with pain medication and infection control, among other measures.
"Even if he does pull through, we don't know what the future holds," Maldonado says. "We're just praying every day. Every day is a blessing."