Epidermolysis Bullosa: The Texan baby Ja'bari Gray is born without skin, says his mother



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Ja Gray Gray, who, according to doctors, was born with epidermolysis bullosa, a condition that makes her skin appear translucent or nonexistent. (Priscilla Maldonado)

It should have been one of the happiest moments in Priscilla Maldonado's life, but the 25-year-old mother was terrified.

It was New Year's Day and she was just giving birth to her newborn son, Ja'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 place him 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 said Thursday during a phone interview.

It was only an hour later that Maldonado understood what was wrong.

Maldonado stated that she had been escorted to the Intensive Care Unit for Neonates (NICU) of the San Antonio Methodist Hospital. 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 stated that Ja'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 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?" Maldonado said that she had 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 Ja'bari was born by emergency caesarean section because doctors were concerned about his heart rate.

He became more scary from there.

According to Maldonado, the doctors first told her husband Marvin Gray that they suspected Ja'bari of having a congenital aplasia cutis, a rare congenital condition in which babies are born without skin or sometimes even with bones on 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 second-hand toys and clothes that she feared she could never 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," said the mother. "He's here for a reason."

Ja'bari was transferred late last week to Texas Children's Hospital in 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: "Even though the trip was extremely difficult for the baby Ja'bari and his family, we were fortunate enough to look for alternatives and facilitate the transfer to the Children's Hospital from Texas. Our doctors and nurses felt extremely happy to take care of Ja'bari and he will continue to be present 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 Philadelphia Children's Hospital, told the Washington Post that based on this information, he would also suspect that the child could have a serious case of Eb . Taylor, who said he witnessed 50 to 60 cases during his career, explained that with the condition he is a layer of skin, but it 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 will have to face surgery and "disfigurement".

Ja'bari underwent his first surgery Thursday at Texas Children's Hospital to remove scar tissue from his neck that had stuck his chin to his chest and made breathing difficult for him, his mother said. She said Friday in a Facebook message that there were no problems and that he "was doing wonderfully 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 raised more than $ 74,000.

Maldonado said his son would require additional surgeries to break down scar tissue and graft skin developed in the lab.

And, she said, she hopes surgeons can open her son's eyes by saying, "I do not even know what color they are."

"I have never seen his 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 that way. "It's sad that I can not do that, I can not look in his eyes."

She said that she would fight for him "forever".

"Until the end," she says, until he gives up.

Read more:

Three goodbyes in three days: Why did these parents watch their children die at home?

"We had no hope": The amazing story of the baby born with the brain on the outside of the skull

This woman develops a second skeleton – and she encloses it in her own body

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