Doctors at Texas Children’s Hospital in Houston, where he was transferred Friday, have tentatively diagnosed him with epidermolysis bullosa, a rare genetic connective tissue disorder that leaves skin subject to blisters and tears from the most minor trauma.
“My whole time being pregnant, everything was going good… then an ultrasound showed that he wasn’t gaining weight so they decided to induced me at 37 weeks,” said Maldonado.
Doctors whisked Maldonado into an emergency C-section. When Ja’bari arrived, he weighed only three pounds, he was missing large swaths of skin and his eyes were fused shut.
“The skin disorder he has is so very rare that no has ever seen it before and is very hard to treat,” Maldonado said.
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Ja’bari has some skin on his head and legs, but none on his arms or torso.
He currently requires a breathing machine, and he’s being treated with ointments and frequently changed dressings to stave off infection, said Maldonado.
Maldonado has only been able to hold Ja’bari twice.
“You have to be dressed in a gown and gloved up,” she said. “It’s not skin to skin, it’s not the same.”
Doctors aren’t positive that the condition is epidermolysis bullosa, but that disease is inherited, so Maldonado and her husband are undergoing genetic testing to confirm the diagnosis.
“They’re just really focused on keeping him comfortable right now,” Maldonado told the Associated Press.
“It could be two to three weeks before they have an answer. They don’t want to treat my son for the wrong thing.”
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Maldonado and her husband have two other children, ages five and six, who are staying with Maldonado’s mother while the couple stays with Ja’bari at the hospital.
“It’s hard to go to work just worrying about Ja’bari’s health and he have another event of breathing,” said Maldonado. “It’s taken a complete toll on all of us.”
Doctors are in the process of creating a treatment plan for Ja’bari, but they hope to perform surgery to cut scar tissue that is fusing Ja’bari’s chin to his chest.
Maldonado says doctors don’t know how much longer Ja’bari will need to remain in hospital.
“Even if he does pull through, we don’t know what the future holds,” said Maldonado.
“Each and every day is a blessing that he is still fighting to live on this earth, and donation big or small will be such a blessing to us.”
— With files from the Associated Press
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