21 Apr 2019: Texas: Infant born without skin struggling for life
The day which was supposed to bring joy to 25-year-old Priscilla Maldonado left her terrified.
She gave birth to her third child, a boy, Ja'bari, on 1 January this year at the Methodist Hospital in San Antonio, Texas.
However, she later learned that her baby suffers from a rare disorder and was born without skin. He is currently struggling for life.
Skin Condition: Most of his body was missing skin, eyes fused closed
Priscilla Maldonado and her husband, Marvin Gray, were not aware of any such complication in their newborn until the day he arrived.
When the couple was taken to the newborn intensive care unit (NICU), they saw that their son was missing skin on most of his body including, his neck, chest, back and arms, hands and feet.
Moreover, his eyes were fused closed.
Details: While doctors were clueless, Priscilla was all lost
While talking to News 4, Priscilla said, "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 and lost. I didn't know what was going on or what was going to happen."
The doctors were clueless and Priscilla was lost.
Didn't give up: Doctors suggested parents to let the infant die in comfort
Meanwhile, the parents were told that they should take the infant home and let him die amid the comfort of his home.
While preparing for the worst, Priscilla slipped into a dark place and even started packing up Ja'bari's toys and clothes.
However, soon she decided that she would not give up. "That's my child. He's here for a reason," she said.
Transfer: Infant was transferred to Houston to be examined by specialists
Last week, the parents transferred the baby to Texas Children's Hospital in Houston so that their baby could be examined by specialists.
There, the family came to know that the infant is suffering from Epidermolysis bullosa (EB), a rare genetic condition.
Currently, both mother and son are undergoing genetic testing in order to confirm the diagnosis.
Fact: What is Epidermolysis bullosa?
According to the US National Library of Medicine, "Epidermolysis bullosa is a group of genetic conditions that cause the skin to be very fragile and to blister easily. Blisters and skin erosions form in response to minor injury or friction, such as rubbing or scratching."
EB: Expert suspects that the infant has EB
While talking to the Washington Post, Chief of the Division of Plastic and Reconstructive Surgery at Children's Hospital of Philadelphia, Jesse Taylor, said he suspects that infant has a severe case of EB based on his knowledge of the case.
As per Jesse, a thin layer, which appears to be transparent or nonexistent, is present.
He has seen around 50 to 60 such cases.
Prognosis: Severe cases require several surgeries, prognosis difficult
Jesse said that patients may experience permanent shortening of a muscle and may have areas where the skin is fuses like fingers or toes, just like Ja'bari does.
Moreover, he said a patient with a mild case can lead a normal life but those with severe cases require various surgeries to remove and replace damaged skin hinting that the infant's prognosis will be tough.
Surgery: Ja'bari had undergone his first surgery recently
On Thursday, Ja'bari went through his first surgery at Texas Children's Hospital to remove the scar tissue from his neck.
According to his mother, he experienced difficulty in breathing.
Ja'bari still requires multiple surgeries to break down the scar tissue and graft lab-grown skin.
Priscilla is ready to fight for him forever, she said, "Until the end," adding, "Until he gives up."
Funds: Over $80,000 raised on GoFundMe to help Ja'bari
Ja'bari's parents are traveling back and forth from Houston to their home, where they have two more kids.
Taco Cabana, Priscilla's employer, is helping them by paying for the hotel room.
Moreover, a GoFundMe page has been set up where people are donating money for the infant's treatment.
Over 2,000 people had raised around more than $80,000 to help them cover his medical bill.