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.
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“He’s been in the hospital his whole life,” said Priscilla at the time. “I’ve been able to hold him twice, but you have to be dressed in a gown and gloved-up. It’s not skin-to-skin. It’s not the same.”
Ja’bari’s chin was also fused to his chest, and he required a complicated surgery in order for him to breathe on his own.
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“It’s very scary,” Priscilla told USA TODAY at the time. “But we have faith, that’s all that matters.”
She also received assurance and encouragement from doctors.
“They said they promise, they give us their word, they will not give up on Ja’bari,” she said.
Both Priscilla and her husband worked at Taco Cabana and were understandably struggling financially to keep up with their son’s constant medical needs. They had set up a GoFundMe page to help with Ja’bari’s ongoing expenses and received a great deal of support. That GoFundMe page is no longer active.
At the time, on the GoFundMe page, Priscilla had written, “The skin disorder he has is so very rare that no [doctor] has ever seen it before and is very hard to treat with lil’ to no info at all. It has been very hard for us as a family to side with this it’s hard to go to work just worrying about Ja’bari health and hope he doesn’t have another event of stop breathing. It’s taken a complete toll on all of us. Each and every day is a blessing that he is still fighting to live on this Earth. Any donation big or small will be such a blessing to us thank you and keep following his fight.”
But the good news is, a year later and after countless procedures and skin grafts, on New Year’s Day, Ja’bari’s parents celebrated his first birthday. And they celebrated out of the hospital because they had finally released Ja’bari two months prior, in November. The whole process of care took a long time, but in October, they were able to start kissing Ja’bari and holding him. And his mom noticed that skin-to-skin contact comforted him. Then just a month later, they heard the good news that he would be able to go home. So on January 1 of 2020, they had a party at home, in the theme of Baby Shark. Ja’bari continued to improve, despite his need for future surgeries and specialized medical care.
Priscilla told the Today show, “I’m overwhelmed with happiness. Everything is going fine. It’s working out a lot better than I expected. It feels like having a baby all over again, actually being able to take the baby home.” She shared that she was excited to be giving him a bath in their bath tub, holding him regularly, and other regular newborn activities. She said, “It’s like a dream come true, finally.”
