Ja’bari Gray was born on January 1 with most of his skin missing, and he hasn’t left the hospital since.
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.
His mother, Priscilla Maldonado, has since started a GoFundMe to help with the vast (and unexpected) medical expenses.
READ MORE: ‘Butterfly baby’ born to Calgary couple: ‘It breaks my heart’
“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.
WATCH BELOW: This is how a baby was born with DNA from 3 people
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.”
READ MORE: Medical supervision during birth saves lives. So why do some women choose a ‘free birth’ instead?
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.”
WATCH BELOW: Nebraska woman gives birth to her gay son’s baby after being gestational surrogate
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.
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.
READ MORE: Home births vs. hospital births: What you need to know about both
- Buzz kill? Gen Z less interested in coffee than older Canadians, survey shows
- ‘She gets to be 10’: Ontario child’s heart donated to girl the same age
- Canada updating sperm donor screening criteria for men who have sex with men
- Toyotas, RVs and nearly 3K school buses: A list of vehicle recalls this week
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
Meghan.Collie@globalnews.ca
Comments