News

Baby born without skin, undergoing treatment that could save his life

Baby born without skin, undergoing treatment that could save his life
Health
WARNING: VIdeo contains disturbing images. Viewer discretion is advised. Ja’bari Gray was born on January 1 with most of his skin missing and his eyes fused shut.

Listen

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 .

“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 [doctor] has ever seen it before and is very hard to treat,” Maldonado said.

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.

“It could be two to three weeks before they have an answer. They don’t want to treat my son for the wrong thing.”

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 [hoping] he [doesn’t] have another event of [stopped] 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.”
Read more on globalnews.ca
News Topics :
Similar Articles :
World
SAN ANTONIO Doctors are working toward a diagnosis and care plan for a baby boy who has spent the first three months of his life in hospitals after he...
Health
Hassan, 9, was born with a disease known as junctional epidermolysis bullosa, a condition that makes the skin and organs fragile and prone to blistering. Reuters Listen For the first...
Science
Hassan, who lives in Germany, has a genetic disease junctional epidermolysis bullosa that leaves his skin as fragile as a butterfly s wings. A piece of his skin...
Technology
Junctional epidermolysis bullosa JEB is a rare condition in which the skin will blister from the slightest bumps or scratches. A team led by stem cell researcher Michele De Luca...
Health
The Ottawa area child, known as the Butterfly Boy because of a rare skin disease that leaves him with blistering sores all over his body, was discharged from a Minneapolis hospital...