A three-month-old baby boy born with a rare disease that left him without any skin under his neck could soon receive life-saving treatment.
Yes & bari Gray was born on New Year's Day in San Antonio, Texas, with his eyelids fused and the skin missing almost everywhere except on his head.
Doctors at the Methodist Children's Hospital gave the baby to life and told that his parents, Priscilla Mondalo and Marvin Gray, could do nothing more.
But the couple refused to accept this and after a long fight with their insurance company assured their son a transfer to the Texas Children's Hospital in Houston.
The TCH medical team believes that doctors at the previous hospital incorrectly diagnosed Yes & bari and delayed his treatment, San Antonio Express news reported.
Surgeons are now planning a procedure to open Ja & # 39; bari & # 39; s airway so that he can be removed from a ventilator and then perform skin transplants to cover areas where the skin has not yet grown.
Yes & bari Gray, three months, was born in January 2019 in San Antonio, Texas, with almost no skin under his neck. Pictured: Yes & bari with his mother, Priscilla Mondalo in April 2019
Doctors diagnosed the child with aplasia cutis congenita, a condition in which the skin is absent at birth. Pictured: Yes & # 39; bari in April 2019
Mondalo, the mother of Ja & bari, wrote in a post on GoFundMe that she had no complications during her pregnancy for around 37 weeks when doctors noticed that he did not arrive.
See her doctors The Methodist Children's Hospital decided to seduce her, but on the morning of the operation the heartbeat of Ja & bari dropped so low that an emergency C-section was performed.
It was then that the staff noticed something was very wrong. Yes & bari had skin on his head, neck and some on his legs – but none on his torso or arms.
He was diagnosed with aplasia cutis congenita, a condition in which skin is missing at birth.
These patches, which resemble lesions or open wounds, usually appear on the scalp, but they can also be found on the trunk and limbs.
Aplasia cutis congenita affects approximately one in 10,000 newborns. The cause is unknown, but scientists think it's a genetic disease.
After doctors told Ja & bari's parents that they could no longer do anything, the couple applied for a transfer to the Texas Children's & # 39; s Hospital.
Medicaid initially denied a transfer to TCH because it was & # 39; from the network & # 39; would be, said Fox San Antonio. But a day later, the insurance company decided to approve it.
Relatives told the news station that Medicaid was flooded with complaints after the news broke about the denied transfer.
Yes & # 39; bari (photo) was placed on life support and doctors told his parents that there was nothing left to do
& # 39; It's very amazing. It's just powerful how one word changed this entire scenario for the best for my son, & # 39; said Maldonado, 25 years ago.
After examining Yes & bari, the Texas Children staff think Methodist Children doctors may have made an incorrect diagnosis of the baby.
The new team believes that the baby suffers from epidermolyosis bullosa (EB), a rare genetic disorder that causes the skin to blast and crack, creating rough sores that are susceptible to infection.
EB sufferers lack type VII collagen – a protein that allows the upper layer of the skin to bind to the lower layers.
The slightest movement ensures that the skin falls off constantly and consistently.
EB is rare, according to only one in 50,000 children in the US diagnosed according to Stanford Children & # 39; s Health.
Being a hereditary condition, Maldonado and her husband, Marvin Gray, 34, are currently undergoing genetic testing for the condition, the Express News reported.
& # 39; It may take two to three weeks for an answer & # 39 ;, Maldonado told the newspaper. & # 39; They don't want to treat my son for the wrong. & # 39;
The couple hopes for some form of treatment, but EB has no cure at the moment.
The new medical team from Ja & # 39; bari treats him with painkillers and frequently used dressing packages.
His condition has improved. He only weighed three pounds at birth and now weighs around eight pounds.
But he suffers from complications. Although the skin started to grow in a certain area, his fingers and toes fused during his time in the NICU. In addition, his chin was fused to his neck.
His parents have taken him to the Texas Children's Hospital in Houston, where doctors think he has made the wrong diagnosis and believe that Yes & bari has epidermolyosis bullosa, a rare genetic disorder that causes skin to blast and crack. Pictured: Yes & # 39; bari in March 2019
Skin transplants are planned to cover areas where the skin has not yet grown and to separate the neck of Ja & bari from his breast after fusing. Pictured: Yes & # 39; bari in March 2019
& # 39; Now he has a challenge to overcome what his breathing is because [his airway] is completely bent in half … just because it is fused together, & # 39; Maldonado told Eyewitness News.
However, a team of specialists met the parents of Ja & bari on Monday to discuss the operations they are planning.
They plan to make a small incision under the baby's throat that will hopefully remove the scar tissue that has melted the neck to the breast, the Express News reported.
Once healed from that surgery, doctors are planning to perform skin transplants on the torso, arms and legs of Ja & bari.
Maldonado said she doesn't know how long Ja & bari will stay in TCH, so she and her husband may have to move temporarily.
& # 39; Even if it does go through, we don't know what the future holds & & # 39 ;, she said to the Express news. & # 39; We just pray every day. Every day is a blessing. & # 39;
The family has set up a GoFundMe page to cover the costs of the Yes & Bari medical bills and other specialized medical equipment he needs once he is fired.
So far, more than $ 23,800 has been raised from a $ 50,000 goal.