The parents of a precious baby born with a rare condition that leaves him without skin are hoping that Houston medical specialists can help to ease their baby’s suffering.
Ja’bari Gray was brought into the world on Jan. 1 weighing 3 pounds and missing his skin, except for areas on his head and legs. His mom and dad, Priscilla Maldonado Gray and Marvin Gray, said that it was a normal pregnancy until 37 weeks. Doctors were aware that the baby was not gaining weight and other issues and made the decision to do an emergency cesarean section, Maldonado Gray said on a GoFundMe page.
“It was just completely silent,” his mother told News 4 San Antonio of the moment was baby was brought into the world. “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.”
Medical professionals at Methodist Hospital in San Antonio originally diagnosed the baby with aplasia cutis, an uncommon skin condition in which someone is born without skin, reported the San Antonio Express-News.
Last week, the baby, who is now 3 months old, was moved to Texas Children’s Hospital in Houston, where specialists told the parents that Ja’bari might be suffering from epidermolysis bullosa.
Epidermolysis bullosa is a very uncommon, incurable genetic disease that creates painful blisters on the skin, but can also impact the mouth, esophagus, lungs, muscles, eyes, nails and teeth. The disease affects 20 newborns out of 1 million live births in the U.S.
The parents, who also have other children who are aged 5 and 6, are going through genetic testing because most forms of epidermolysis bullosa are inherited from the parents, the San Antonio Express-News reported.
The baby, who now weighs in at 8 pounds, has to be fed through a tube in his nose and needs frequent dressing changes and pain medicine.
She is not able to comfort him in the typical 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’
PROMISING NEWS! When the family of little Ja'bari Gray arrived in Houston from San Antonio Friday, the last thing they heard from their hometown doctors wasn’t good. Well now, just today, Texas Children's Hospital physicians are saying something different. https://t.co/6IZ4lpUE6u
— FOX 32 News (@fox32news) April 16, 2019
Doctors say there is promising news for the baby born without skin: ‘There is hope’
Ja’bari’s mother said that since her son arrived at the Houston hospital last Friday, a team of four doctors have given her optimistic news, she said to FOX 26 Houston.
“They said they promise, they give us their word, they will not give up on Ja’bari,” she said.
“It’s very scary,” Priscilla Maldonado Gray said to USA TODAY, continuing to say that any small thing could cost him his life. “But we have faith, that’s all that matters.”
The surgery has yet to be scheduled, but “I have tons of hopes now,” she said.