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"I will fight for him forever," the baby's mom Priscilla Maldonado said.
It should have been one of the happiest moments of Priscilla Maldonado's life goal, instead, the 25-year-old mother was terrified.
It was New Year's Day and she had just delivered her newborn sound, Ja'bari.
She said she was her silent cries – and then the hospital room fell silent.
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 is coming to meet his mother.
Instead, she said, doctors and nurses wrapped him up and rushed him out of the room. "I was worried, I was confused," she reported Thursday in a phone interview with The Washington Post.
It was not until that day that Maldonado learned what was wrong.
Maldonado said she was escorted to the Newborn Intensive Care Unit (NICU) at the Methodist Hospital in San Antonio, Texas. There, she said, she saw her son for the first time – connected to tubes and wires, with bandages covering her body where her skin should have been. Maldonado said Ja'bari had his skin left on his head; the skin on his neck, chest, back and arms, hands and feet was missing.
And there was something else – Maldonado said she could not even look into her newborn son's eyes, because they were fused closed.
"Maldonado said she asked the doctors. "They said they did not know, that they had never seen a box like that."
"I felt lost," she added.
Maldonado said Ja'bari was born via an 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 conbad condition in which they were born without skin or even bone on their scalps. The condition of the body.
Maldonado said she and her husband are welcome to their home, make him comfortable and let him die.
She was supposed to be in 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 moved 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 even smallest injuries.
Maldonado said that both are undergoing genetic testing to confirm the diagnosis.
The Methodist Hospital said in a statement that "This is a tremendously difficult journey for baby." We are very fortunate to be in the hospital and to work with children. 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 it was also a serious 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 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 with normal cases, it is necessary to sustain surgery, and that it is incurable.
He said that the prognosis for Ja'bari would be "tough."
"This child is going to have a tough 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 his tissue from his neck, which he had made to his mother. She said in a Facebook message Friday that there are no problems and he is "doing wonderful."
Maldonado and her husband to San Antonio, where Maldonado has two other children. She said her employer, Taco Cabana, has been helping to raise money. By Friday afternoon, more than 2,000 people had raised more than $ 74,000.
Maldonado said that it will require additional surgeries to break down the tissue that is being grown in a lab.
And, she said, at some point, she hopes to be able to open her eyes, saying, "I do not know what color they are."
"It hurts," Maldonado said, explaining that it's her life, she's not able to connect with him in that way. "It's sad I can not do that – I can not look in his eyes."
She said she would fight for him "forever."
"Until the end," she said, "until he gives up."
(Except for the headline, this story has been edited by NDTV staff and is published from a syndicated feed.)
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