Texas: a skinless infant born to fight for life

(MENAFN – NewsBytes)

Texas: a skinless infant born to fight for life
April 21, 2019

The day that was to give joy to Priscilla Maldonado, 25, left her terrified.

She gave birth to her third child, a boy, Jaar, on January 1 of this year at the Methodist Hospital in San Antonio, Texas.

However, she later learned that her baby was suffering from a rare disorder and was born without skin. He is currently fighting for life.

Here is more.

Most of his body lacked skin, fused eyes
Condition of the skin

Priscilla Maldonado and her husband, Marvin Gray, were not aware of such a complication in their newborn until the day of his arrival.

When the couple was taken to the Neonatal Intensive Care Unit (NICU), they found that he was missing skin to his son, including the neck, chest, back, arms, hands and feet.

Moreover, his eyes were merged.

While the doctors were without intelligence, Priscilla was all lost
Details

Speaking to News 4, Priscilla said: "You expect people to be happy after having a baby and I did not know that they would put me in a room and explain to me what was going on. I was confused and lost, I do not know what was going on or what was going to happen. "

The doctors were clueless and Priscilla was lost.

Doctors suggested to parents to let the baby die in comfort
Did not give up

Meanwhile, parents were informed that they should take the baby home and let him die in the comfort of his home.

While she was getting ready for the worst, Priscilla slipped into a dark place and even began to pack the toys and clothes of Ja 'bari.

However, she soon decided not to give up. "He's my child, he's here for a reason," she says.

The infant was transferred to Houston for expert review
Transfer

Last week, the parents transferred the baby to Texas Children's Hospital Houston so that her baby could be examined by specialists.

There, the family learned that the infant was suffering from epidermolysis bullosa (EB), a rare genetic disease.

Currently, the mother and son undergo genetic testing to confirm the diagnosis.

What is epidermolysis bullosa?
Made

According to the National Library of Medicine of the United States, "epidermolysis bullosa is a group of genetic diseases that make the skin very fragile and bloated easily. Blisters and skin erosions form in response to minor injuries or abrasions such as rubbing or scratching. "

An expert suspects that the infant is suffering from EB
EB

During a conversation with the Washington Post, Jesse Taylor, head of the Division of Plastic and Reconstructive Surgery at the Children's Hospital of Philadelphia, said that he suspected a newborn baby. 39; have a serious case of EB on the basis of his knowledge of the case.

According to Jesse, a thin layer, which seems to be transparent or non-existent, is present.

He has seen about 50 to 60 cases of this type.

Serious cases require several surgeries, the prognosis is difficult
Prognosis

Jesse explained that patients may experience permanent shortening of the muscle and have areas where the skin is fused, such as fingers or toes, as does Ja. Bari.

In addition, he said, a patient with a mild case can lead a normal life, but severe cases require various surgeries to remove and replace damaged skin, suggesting that the infant's prognosis will be difficult.

Jaar had recently undergone his first surgery
Surgery

On Thursday, Jaar suffered his first operation at Texas Children's Hospital to remove scar tissue from his neck.

According to his mother, he had trouble breathing.

Jaar bari still needs several surgeries to break down the scar tissue and graft the skin grown in the lab.

Priscilla is ready to fight for him forever, she says. "Until the end," adding, "until he gives up."

More than $ 80,000 collected on GoFundMe to help Ja & # 39; bari
Funds

Jaar's parents go from Houston to their home, where they have two other children.

Taco Cabana, Priscilla's employer, helps by paying for the hotel room.

In addition, a GoFundMe page has been created to allow people to donate money for infant treatment.

More than 2,000 people raised more than $ 80,000 to help cover their medical bill.

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