A Texas baby born without skin in early 2019 had doctors baffled.
Ja’bari Gray was born weighing a mere 3 pounds and missing skin everywhere except on his head and legs. On top of the skin abnormality, the infant’s eyes were also fused shut, and his fingers and toes fused together.
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Ja’bari’s mother, Priscilla Maldonado Gray, said doctors noticed there was something wrong with the pregnancy at around 37 weeks when the baby stopped gaining weight and there were other issues. Up until that point, the pregnancy had progressed normally and as expected.
When she delivered Ja’bari via an emergency C-section on January 1, 2019, the room fell eerily quiet because he was born without skin.
“It was just completely silent,” the Texas mother told News 4 San Antonio. “You expect people to be happy after you have a baby, and I had no idea until they put me in a room and explained what was going on. I was just confused, lost. I didn’t know what was going on. What what was going to happen.”
Doctors Weren’t Sure How to Diagnose the Baby Without Skin
Doctors originally diagnosed the newborn with aplasia cutis, “a condition in which there is congenital (present from birth) absence of skin,” as defined by the Genetic and Rare Diseases Information Center.
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But after evaluating him more thoroughly, specialists determined that his condition of being without skin may actually be another rare disease known as epidermolysis bullosa. Epidermolysis bullosa is a “rare, incurable genetic disease that causes blisters on the skin, but can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth.”
It occurs in [20] out of every million births in the United States.
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On April 12, 2019, baby Ja’bari was transferred to a new hospital in Houston where doctors are attempting to better understand Ja’Bari’s condition as quickly as possible. Both Priscilla and her husband Marvin Gray underwent genetic testing because the condition is typically inherited. They awaited a firm diagnosis for a long time, as medical professionals were hesitant to treat the baby without skin for the wrong disease.
During an interview at the time, Ja’bari’s mother said, “We want to find an answer right now, but everything is in the air. They’re just really focused on keeping him comfortable right now.” It was difficult to await a diagnosis, but they did find the condition of the baby without skin was epidermolysis bullosa.
In the meantime in the Houston hospital, 3-month-old Ja’bari was nourished through a feeding tube in his nose, and he required constant bandage changes and pain medication. His mother also said that he had to be on a breathing machine and that “He passed away twice and the [doctors] have brought him back.”
Sadly, Priscilla was only able to hold her baby twice during those first few months, as the risks were too high — but as one can imagine, the experience just isn’t the same.
