SAN ANTONIO, Texas • It should have been one of the happiest moments of Ms Priscilla Maldonado’s life but, instead, the 25-year-old mother was terrified.
It was New Year’s Day and she had just delivered her newborn son, Ja’bari.
She said she heard her son’s soft cries – and then the hospital room fell silent.
No one told her she had a healthy baby boy. No one told her how much he weighed or how long he was. No one brought him to meet his mother and lay him on her chest.
Instead, she said, doctors and nurses wrapped him up and rushed him out of the room.
“I was worried. I was confused,” she recalled on Thursday in a phone interview with The Washington Post.
It wasn’t until about an hour later that Ms Maldonado learnt what was wrong.
Ms Maldonado said she was escorted to the newborn intensive care unit at Methodist Hospital in San Antonio, Texas.
There, she said, she saw her son for the first time – connected to tubes and wires, with bandages covering his body where his skin should have been.
Ms Maldonado said Ja’bari Gray had skin only on his head and parts of his legs; the skin on his neck, chest, back and arms, hands and feet was missing.
And there was something else – Ms Maldonado said she could not even look into her newborn son’s eyes, because they were fused closed.
“I asked (the doctors) what was wrong with him – was he going to survive,” Ms Maldonado said. “They said they didn’t know, that they had never seen a case like that.”
She said doctors first told her and her husband, Mr Marvin Gray, that they suspected Ja’bari had aplasia cutis congenita, a rare congenital condition in which babies are born without skin or sometimes even bone on their scalps.
Ja’bari was transferred over a week ago to Texas Children’s Hospital in Houston. His mother said specialists now believe he may have something different – a rare genetic condition called epidermolysis bullosa, an autoimmune disease that causes the skin to become fragile, developing blisters and erosions from even the smallest injuries.
Ms Maldonado and her husband have been travelling back and forth from Houston to their home in San Antonio, where Ms Maldonado has two other children.
She said that her son will require operations to break down scar tissue and graft skin that is being grown in a lab.
She said she would fight for him “forever”.
“Until the end,” she said, “until he gives up.”
WASHINGTON POST
