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SAN ANTONIO, TEXAS (WASHINGTON POST) – This should have been one of the happiest moments in Priscilla Maldonado's life, but her 25-year-old mother was terrified.
It was New Year's Day and she had just given birth to her newborn son, Jaar bari.
She said she heard her son's soft cries – and then the hospital room was killed.
Nobody told her that she had a healthy baby.
Nobody told him how much he weighed or how long he was.
Nobody brought her to meet her mother and lay her on his chest.
Instead, she said, doctors and nurses wrapped her up and rushed her out of the room.
"I was worried, I was confused," she recalled Thursday (April 18) during a phone interview with the Washington Post.
It was not until about an hour later that Maldonado understood what was wrong.
Maldonado said that she had been escorted to the ICU's Neonatal Intensive Care Unit in San Antonio, Texas.
There, she says, 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 that bari had only skin on his head and parts of his legs. the skin of his neck, chest, back and arms, hands and feet was missing.
And there was something else – Maldonado said that she could not even look into the eyes of her newborn son because they were merged.
"I asked what was wrong with him – was he going to survive," said Maldonado, she asked the doctors. "They said that they did not know that they had never seen a case like that."
"I felt lost," she added.
Maldonado said that Jaar was born by emergency cesarean section because doctors worried about his heart rate. He became more scary from there.
According to Maldonado, the doctors first told her to Marvin Gray and her husband that they suspected bari of having aplasia conbad cutis, a rare conbad disorder in which babies are born without skin or sometimes even with bones to the scalp.
The disease can also affect other areas of the body.
Maldonado said that she and her husband had been invited to take their newborn baby home, to put him at ease and to let him die.
She admitted that she had slipped into a dark place. At one point, she had packed her son's crib and donated used toys and clothes that she feared never to be able to wear.
It was a way for her to prepare for the worst, she said. But she would not let herself be abandoned.
"It's my child," says the mother. "He's here for a reason."
Jaar was transferred late last week to Texas Children's Hospital Houston. His mother said that specialists now think that he might have something different – a rare genetic disease called epidermolysis bullosa (EB).
EB is an autoimmune disease that weakens the skin and develops blisters and erosions caused by minor injuries.
Maldonado said that she and her son are undergoing genetic testing to confirm the diagnosis.
The Methodist Hospital said in a statement: "Although the trip was extremely difficult for the baby Ja & bari and his family, we were fortunate to look for alternatives and facilitate their transfer to the Hospital For children from Texas, our doctors and nurses have felt extremely happy to take care of Jaar and it will continue to be in our thoughts and prayers. "
Texas Children's Hospital did not immediately comment.
Jesse Taylor, head of the Division of Plastic and Reconstructive Surgery at the Children's Hospital of Philadelphia (CHOP), told The Post that according to this information he would also suspect that the child might have a severe case of epidermolysis bullosa.
Taylor, who has reported witnessing 50 to 60 cases during her career, explained that with epidermolysis bullosa, there is a layer of skin, but she is thin, appearing transparent or even nonexistent.
He added that patients could also suffer from scarring (tightening of the skin) and have areas of fusion of the skin, such as fingers or toes.
Taylor said the disease was incurable and although patients with minor illnesses could lead a normal life, severe forms required numerous surgeries to remove scar tissue and replace skin damaged by healthy skin.
He said the prognosis for Ja 'bari would be "difficult".
"This child is going to have a very difficult life ahead of him," he said, noting that the newborn was going to have surgery and "disfigurement".
Jaar bari underwent her first surgery Thursday at Texas Children's Hospital in order to remove scar tissue from her neck that had stuck her chin to her chest and made her breathing difficult, said her mother .
She said Friday in a Facebook message that there were no problems and that he "is doing very well".
Maldonado and her husband travel from Houston to San Antonio, where Maldonado has two other children.
She explained that her employer, Taco Cabana, was helping pay for a hotel room and that people were collecting money on GoFundMe to cover their medical bills.
Friday afternoon, more than 2,000 people had raised more than 74,000 USD (100,000 USD).
Maldonado said his son would require additional surgeries to break down scar tissue and graft skin developed in the lab.
And, she added, she hopes surgeons can open her son's eyes by saying, "I do not even know what color they are."
"I've never seen her eyes, it hurts," said Maldonado, explaining that during the first three months of her son's life, she was not able to communicate with him about this. way.
"It's sad not to be able to do that – I can not look into his eyes."
She said that she would fight for him "forever".
"Until the end," she says, "until he gives up."
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