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A three-month-old baby, born of a rare disease that would leave him skinless under his neck, could soon receive life-saving treatment.
Jaar Gray was born on New Year's Day in San Antonio, Texas, with welded eyelids and missing skin almost everywhere except on the head.
Doctors at the Methodist Hospital for Children ensured the child's survival and informed his parents, Priscilla Mondalo and Marvin Gray, that they could do nothing more.
But the couple refused to accept it and, after a long battle with their insurance company, transferred their son to Texas Children's Hospital in Houston.
The TCH medical team believes that the doctors at the old hospital misdiagnosed Ja 'bari, delaying his treatment, reported the San Antonio Express-News.
Surgeons are now considering a procedure to open the airways of Ja & bari in order to be able to remove it from a ventilator and proceed with skin grafts to cover areas where the skin has not yet pushed.
Yar Gray, three months old, was born in January 2019 in San Antonio, Texas, almost skinless under her neck. On the photo: Jaar with his mother, Priscilla Mondalo, in April 2019
Doctors diagnosed infants with congenital skin aplasia, a condition characterized by the absence of skin at birth. On the photo: Ja bari in april 2019
Mondalo, Ja's mother, wrote in an article on GoFundMe that she had not experienced any complication during her pregnancy until about 37 weeks old when doctors noticed that she was not pregnant. he was not gaining weight.
His doctors at The Methodist Children's Hospital decided to convince her, but on the morning of the procedure, Jaar's heart rate dropped so low that an emergency Caesarean section was performed.
It was then that the staff noticed that something was wrong. Ja bari had skin on the head, neck and a little on the legs – but not on the chest or on the arms.
He was diagnosed with aplasia cutis conggenita, a condition characterized by the absence of skin at birth.
Usually, these patches, which look like lesions or open wounds, appear on the scalp, but can also be on the torso and limbs.
Congenital skin aplasia affects about one in 10,000 newborns. The cause is unknown, but scientists believe that it is a genetic disease.
After the doctors told Jaar's parents that they could not do anything anymore, the couple requested a transfer to the Texas Children's Hospital.
In the beginning, Medicaid refused a transfer to TCH because Fox would be "outside the network," according to Fox San Antonio. But, one day later, the insurance company decided to approve it.
Family members told the news channel that Medicaid had been inundated with complaints after the announcement of a news release denied.
Jaar (photo) was placed under resuscitation and the doctors told her parents that they could not do anything anymore
"It's very amazing. It's awesome to see how one word has changed this whole scenario for the better for my son, "said Maldonado, 25.
After reviewing Ja 'bari, the Texas Children's staff think that the Methodist Children's doctors may have misdiagnosed the infant.
The new team thinks the baby is suffering from epidermolyosis bullosa (EB), a rare genetic disease that causes blistering and bursting of the skin, leaving sharp wounds susceptible to infections.
People with EB do not have type VII collagen – a protein that allows the upper layer of skin to bind to the lower layers.
The slightest movement causes a constant and constant fall of the skin.
According to Stanford Children's Health, EB is rare, with only one in 50,000 children in the United States diagnosed with it.
As this is a hereditary disease, Maldonado and her husband, Marvin Gray, 34, are currently undergoing genetic testing for this disease, Express-News reported.
"It could take two to three weeks before they get an answer," Maldonado told the newspaper. "They do not want to treat my son for the wrong thing."
The couple is hoping for treatment, but EB currently has no cure.
The new medical team from Ja? Bari treats it with pain relievers and frequently changed bandages.
His condition has improved. He weighed only three pounds at birth and now weighs about eight pounds.
But he suffers from complications. Although the skin began to grow in certain areas, her fingers and toes were welded during her stay at the NICU. In addition, her chin became fused to her neck.
His parents had him transferred to Texas Children's Hospital of Houston, where doctors believe that he was misdiagnosed and that bari bari is suffering from epidermolysis bullosa, a rare genetic disease that causes blisters and an explosion of the skin. On the photo: Ja bari in march 2019
Skin grafts have been planned to cover areas where the skin has not yet grown and to separate Jaar's neck from his chest after their fusion. On the photo: Ja bari in march 2019
& # 39; Now he has another challenge to overcome which is his breathing, because [his airway] is completely folded in half … just because it's merged, "Maldonado told Eyewitness News.
However, a team of specialists met with parents in Jaar Bay on Monday to discuss the surgeries being considered.
They plan to make a small incision under the baby's throat that hopefully will remove the scar tissue that has caused the neck to melt up to the chest, reported the Express-News.
Once cured of the operation, doctors plan to perform skin grafts on the torso, arms and legs of Ja 'bari.
Maldonado said that she did not know how long Bari would stay at TCH, so she and her husband might be forced to relocate temporarily.
"Even if it succeeds, we do not know what the future holds for us," she told Express-News. & # 39; We only pray daily. Every day is a blessing.
The family has put together a GoFundMe page to help cover the cost of medical bills from Ja? Bari and any other specialized medical equipment that it will need once it is released.
So far, more than $ 23,800 has been raised on a target of $ 50,000.
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