The infant has epidermis only on the head and legs.
His name means the brave in Swahili. Ja’bari Gray was born on January 1 with a rare condition: he has no skin over much of his body. Doctors are still hesitant about the diagnosis. His story is told in the local newspaper San Antonio Express-News.
An uncertain diagnosis
Since birth, Ja’bari has not left the hospital. First the Methodist Hospital in Houston, where doctors diagnosed him with aplasia cutis, a congenital disease characterized by the absence of skin on more or less important parts of the body. If the child has the symptoms, the new doctors who deal with it are not sure that this is the correct diagnosis.
Some time after his birth, he was transferred to the Texas Children’s Hospital, still in the city of Houston, where doctors are more used to dealing with rare skin diseases. They think it could be epidermolysis bullosa. This genetic disease affects 20 babies in a million in the United States. It causes extreme weakening of the skin which blisters and tears very easily. No treatment can cure it permanently, but medication can relieve pain and to some extent prevent infections.
Since epidermolysis bullosa is an inherited disease, Priscilla and Marvin, the baby’s parents, underwent genetic testing to find out if they carried the disease gene. They will have the results in two to three weeks.
The baby is in critical condition
Today, Ja’bari receives pain medication, ointments to stave off infection, and is under constant surveillance. The baby has managed to gain weight since birth, going from 1.36 kilos to 2.26 kilos. Its feeding is done only by nasal tube. In the next few weeks, surgeons must make an incision in his throat to separate his chin from his chest.
The doctors are very cautious about his case. A representative from Texas Children’s Hospital told a reporter from IFLScience the child remained in critical condition. “Even if he pulls through, we don’t know what the future holds,” his mother said. “We just pray every day. Every day is a blessing.”
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