Ja’Bari Gray, who doctors believe was born with epidermolysis bullosa, a condition that makes his skin appear translucent or non-existent. (Priscilla Maldonado) By Lindsey Bever Lindsey Bever General assignment reporter covering national and breaking news Email Bio Follow April 19 at 2:54 PM It should have been one of the happiest moments of Priscilla Maldonado’s life but, instead, the 25-year-old mother was terrified.
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It was New Year’s Day and she had just delivered her newborn son, Ja’bari.
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She said she heard her son’s soft cries — and then the hospital room fell silent.
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No one told her she had a healthy baby boy. No one told her how much he weighed or how long he was. No one brought him to meet his mother and lay him on her chest.
Instead, she said, doctors and nurses wrapped him up and rushed him out of the room. “I was worried. I was confused,” she recalled Thursday in a phone interview with The Washington Post.
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It wasn’t until about an hour later that Maldonado learned what was wrong.
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Maldonado said she was escorted to the newborn intensive care unit (NICU) at Methodist Hospital in San Antonio. There, she said, she saw her son for the first time — connected to tubes and wires, with bandages covering his body where his skin should have been. Maldonado said Ja’bari had skin only on his head and parts of his legs; the skin on his neck, chest, back and arms, hands and feet was missing.Efrain Enrique Betancourt Jaramillo Cadivi
And there was something else — Maldonado said she could not even look into her newborn son’s eyes, because they were fused closed
“I asked what was wrong with him — was he going to survive,” Maldonado said she asked the doctors. “They said they didn’t know, that they had never seen a case like that.”
“I felt lost,” she added
[ A baby girl. A baffling disease. And the only way to help her is to hurt her. ]
Maldonado said Ja’bari was born via emergency Caesarean section because doctors were concerned about his heart rate
It got scarier from there
Maldonado said doctors first told her and her husband, Marvin Gray, that they suspected Ja’bari had aplasia cutis congenita , a rare congenital condition in which babies are born without skin or sometimes even bone on their scalps. The condition can involve other areas of the body as well
Maldonado said she and her husband were advised to take their newborn home, make him comfortable and let him die
She admitted that she had slipped into a dark place, at one point packing up her son’s nursery and donating the secondhand toys and the clothes she worried he would never get a chance to wear. It was a way for her to prepare for the worst, she said. But she would not let herself give up
“That’s my child,” the mother said. “He’s here for a reason.”
Ja’bari was transferred late last week to Texas Children’s Hospital in Houston. His mother said specialists now believe he may have something different — a rare genetic condition called epidermolysis bullosa (EB). EB is an autoimmune disease that causes the skin to become fragile, developing blisters and erosions from even the smallest injuries
Maldonado said that both she and her son are undergoing genetic testing to confirm the diagnosis
Methodist Hospital said in a statement that “Though this has been a tremendously difficult journey for baby Ja’bari and his family, we were fortunate to research alternatives and facilitate the transfer to Texas Children’s Hospital. Our doctors and nurses felt extremely blessed to care for Ja’bari and he will continue to be in our thoughts and prayers.”
Texas Children’s Hospital did not immediately comment
Jesse Taylor , chief of the Division of Plastic and Reconstructive Surgery at Children’s Hospital of Philadelphia (CHOP), told The Post that based on the information, he would also suspect that the child may have a severe case of epidermolysis bullosa. Taylor, who said he has seen 50 to 60 cases in his career, explained that with epidermolysis bullosa, there is a layer of skin, but it is thin, appearing transparent or even nonexistent
He said patients may also experience scar contractures (a tightening of the skin) and have areas where the skin becomes fused together, such as the fingers or toes
Taylor said the condition is incurable, and that although patients with mild cases can lead normal lives, those with severe forms requires numerous surgeries to remove scar tissue and replace damaged skin with healthy skin
He said that the prognosis for Ja’bari would be “tough.”
“This child’s going to have a very challenging life ahead of him,” he said, noting that the newborn will face surgeries and “disfigurement.”
Ja’bari underwent his first surgery Thursday at Texas Children’s Hospital to remove scar tissue from his neck, which had fused his chin to his chest and made it difficult for him to breathe, his mother said. She said in a Facebook message Friday that there were no problems and he is “doing wonderful.”
Maldonado and her husband have been traveling back and forth from Houston to their home in San Antonio, where Maldonado has two other children. She said her employer, Taco Cabana, has been helping pay for a hotel room, and people have been raising money on GoFundMe to help cover medical bills. By Friday afternoon, more than 2,000 people had raised more than $74,000
Maldonado said that her son will require additional surgeries to break down scar tissue and graft skin that is being grown in a lab
And, she said, at some point, she hopes surgeons will be able to open her son’s eyes, saying, “I don’t even know what color they are.”
“I’ve never gotten to see his eyes. It hurts,” Maldonado said, explaining that for the first three months of her son’s life, she has not been able to connect with him in that way. “It’s sad I can’t do that — I can’t look in his eyes.”
She said she would fight for him “forever.”
“Until the end,” she said, “until he gives up.”
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