The Texas parents of a baby born without skin are hoping that Houston specialists can help their son who's so fragile he has only been held twice by his mother in three months.
Ja’bari Gray was born Jan. 1 weighing 3 pounds and missing his skin, except on his head and legs. His mother and father, Priscilla Maldonado Gray and Marvin Gray said the pregnancy was progressing normally until 37 weeks. Doctors noticed the baby wasn't gaining weight and other issues and decided on an emergency cesarean section, Maldonado Gray revealed on a GoFundMe page.
"It was just completely silent," his mother told News 4 San Antonio of the baby's birth. "You expect people to be happy after you have a baby and I had no idea until they put me in a room and explained what was going on. I was just confused, lost. I didn’t know what was going on. What what was going to happen."
Doctors at Methodist Hospital in San Antonio initially diagnosed the baby with aplasia cutis, a rare skin condition in which someone is born without skin, reported the San Antonio Express-News.
Rare, incurable disease
Last week, the baby, now 3 months old, was transferred to Texas Children’s Hospital in Houston, where specialists told the family that Ja’bari might be suffering from epidermolysis bullosa.
Epidermolysis bullosa is a rare, incurable genetic disease that causes blisters on the skin, but can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth. The disease impacts 20 newborns out of 1 million live births in the U.S.
The parents, who also have children ages 5 and 6, are undergoing genetic testing because most forms of epidermolysis bullosa are inherited, the San Antonio Express-News reported.
The infant, who now weighs 8 pounds, needs to be fed through a tube in his nose and needs frequent dressing changes and pain medication.
His parents both work at Taco Cabana and have set up a GoFundMe page. His mother wrote on the page of her son: "each day he is fighting to live on this Earth."
She isn't able to comfort him in the usual way mothers do.
"I’ve been able to hold him twice, but you have to be dressed in a gown and gloved-up," she said. "It’s not skin-to-skin. It’s not the same.”
'They will not give up'
Ja’bari's mother said that since her son arrived at the Houston hospital last Friday, a team of four doctors have given her encouraging news, she told FOX 26 Houston.
"They said they promise, they give us their word, they will not give up on Ja'bari," she said.
In addition to his skin condition, Ja’bari was born with his chin fused to his chest. His eyes, his toes and fingers were also fused shut. He needs surgery to open his airway so he can breathe on his own, she said.
"It's very scary,” Priscilla Maldonado Gray told USA TODAY, adding that any small thing could cost him his life. "But we have faith, that's all that matters."
The surgery hasn't yet been scheduled, but "I have tons of hopes now," she said.
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https://www.usatoday.com/story/life/allthemoms/2019/04/17/texas-baby-born-without-skin-doctors-look-for-answers-aplasia-cutis-epidermolysis-bullosa/3495090002/
2019-04-17 18:32:00Z
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