"I'll fight for him forever," said the baby's mother, Priscilla Maldonado.
It should have been one of the happiest moments in Priscilla Maldonado's life, but instead the 25-year-old mother was scared. 19659003] It was New Year's Day and she had just released her newborn son Ja'bari.
She said she heard the soft cry of her son – and then the hospital room fell silent.
healthy baby. Nobody told her how much he weighs or how long he is. No one brought him to his mother and put her on her breast.
Instead, she said, doctors and sisters held him together and drove him out of the room. "I was worried, I was confused," she recalled Thursday in a telephone interview with the Washington Post.
Only an hour later, Maldonado learned what was wrong.
Maldonado said she was escorted to the Neonatal Intensive Care Unit (NICU) at Methodist Hospital in San Antonio, Texas. There, she said, she saw her son for the first time ̵
And there was something else – Maldonado said she could not even look her newborn son in the eye because they were closed.
"I asked what was wrong with him – would he survive," Maldonado said, asking the doctors. "They said that they did not know that they had never seen such a case."
"I felt lost," she added.
Maldonado said that Ja & # 39; bari was born about his heart rate due to doctors over the emergency caesarean section.
From there it became more frightening.
Maldonado said the doctors first told her and her husband Marvin Gray that they suspected that Yes, "bari aplasia cutis congenita, a rare congenital situation where babies are born without skin or even bone the scalp. The condition can also affect other areas of the body.
Maldonado said that she and her husband were advised to take their newborn home, make it comfortable and let him die.
She admitted she had slipped into a dark place. Once she packed her son's nursery and donated the second-hand toys and the clothes she feared would never get a chance to dress. It was a way for her to prepare for the worst, she said. But she did not give up.
"This is my child," said the mother. "He's here for a reason."
Ja & # 39; bari was transferred to the Texas Children's Hospital in Houston last week. His mother said that professionals now believe that he could have something else – a rare genetic disorder called epidermolysis bullosa (EB). EB is an autoimmune disease that causes the skin to become brittle, causing blisters and erosion even in the smallest injuries.
Maldonado said that both she and her son are undergoing genetic testing to confirm the diagnosis.
said, "Although this was an extremely difficult journey for baby Ja & bari and his family, we were fortunate enough to look for alternatives and facilitate the transfer to the Texas Children's Hospital Doctors and nurses felt exceptionally blessed, yes, and he will continue to be in our thoughts and prayers. "
The Texas Children's Hospital did not comment immediately.
Jesse Taylor, Head of the Department of Plastic and Reconstructive Surgery at the Children's Hospital of Philadelphia (CHOP), told the post office. Based on the information, he also suspects that the child has a severe case of epidermolysis bullosa. Taylor, who said he has seen 50 to 60 cases in his career, explained that epidermolysis bullosa has a layer of skin that is thin, transparent, or absent.
He said patients may also experience scar contractures (tightening the skin) and have areas where the skin melts together, such as fingers or toes.
Taylor said the disease is incurable, and although patients with mild cases may lead a normal life, those with severe forms require numerous surgeries to remove scar tissue and replace damaged skin with healthy skin.
He said the forecast for Ja & bari was "tough".
"This child will have a very difficult life ahead of him," he said, noting that the newborn will be subjected to surgery and "disfigurement."
Yes, Bari was subjected to his first surgery on Thursday at Texas Children's Hospital to remove scar tissue from his neck that had fused his chin with his chest, breathing heavily for him, his mother said. She said in a Facebook message on Friday that there was no problem and that he was "doing fine".
Maldonado and her husband went from Houston to San Antonio, where they have two more children. She said her employer, Taco Cabana, helped pay for a hotel room, and people had raised money for GoFundMe to cover the medical bills. By Friday afternoon, more than 2,000 people had raised more than $ 74,000.
Maldonado said her son needs additional surgery to break down scar tissue and graft skin that is grown in a lab.
At some point she hopes that surgeons can open her son's eyes and says, "I do not even know what color they have."
"I never saw his eyes. It hurts, "Maldonado said, explaining that she had failed to connect with him in the first three months of her son's life. "It's sad that I can not do that – I can not look him in the eye."
She said she would "fight forever".
"Until the end," she said, "until he gives up."
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