A three-month-old baby boy born with a rare disease that left him without any skin below the neck could soon be receiving life-saving treatment.
Ja’bari Gray was born on New Year’s Day in San Antonio, Texas, with his eyelids fused together and skin missing from almost everywhere except on his head.
Doctors at Methodist Children’s Hospital put the infant on life support and told his parents, Priscilla Mondalo and Marvin Gray, there was nothing more they could do.
But the couple refused to accept this and, after a long-fought battle with their insurance company, secured their son a transfer to Texas Children’s Hospital in Houston.
The medical team at TCH believes doctors at the previous hospital misdiagnosed Ja’bari, delaying his treatment, reported the San Antonio Express-News.
Surgeons are now planning a procedure to open Ja’bari’s airway so he can be taken off a ventilator and will then perform skin grafts to cover areas where skin hasn’t grown yet.
Ja’bari Gray, three months, was born in January 2019 in San Antonio, Texas, with almost no skin below his neck. Pictured: Ja’bari with his mother, Priscilla Mondalo in April 2019
Doctors diagnosed the infant with aplasia cutis congenita, a condition in which there is the absence of skin at birth. Pictured: Ja’bari in April 2019
Mondalo, Ja’bari’s mother, wrote in a post on GoFundMe that she suffered no complications throughout her pregnancy until around the 37-week mark when doctors noticed he wasn’t gaining weight.
Her doctors at Methodist Children’s Hospital decided to induce her but, on the morning of the procedure, Ja’bari’s heart rate dropped so low that an emergency C-section was performed.
It was then that staff noticed something was very wrong. Ja’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 there is absence of skin at birth.
Usually these patches, which resemble lesions or open wounds, occur on the scalp, but can also be found on the torso and limbs.
Aplasia cutis congenita affects about one in 10,000 newborns. The cause is unknown, but scientists believe it is a genetic disease.
After doctors told Ja’bari’s parents that there was nothing more they could do, the couple petitioned a transfer to Texas Children’s Hospital.
At first, Medicaid denied a transfer to TCH because it would be ‘out of network’, according to Fox San Antonio. But, one day later, the insurance company decided to approve it.
Family members told the news station that Medicaid was flooded with complaints after news broke about the denied transfer.
Ja’bari (pictured) was placed on life support and doctors told his parents there was nothing more they could do
‘It’s very amazing. It’s just powerful how one word changed this whole scenario for the best for my son,’ Maldonado, 25, said.
After examining Ja’bari, staff at Texas Children’s believe doctors at Methodist Children’s may have misdiagnosed the infant.
The new team believes the baby is suffering from epidermolyosis bullosa (EB), a rare genetic disorder that causes the skin to blister and burst, leaving raw sores that are susceptible to infections.
Sufferers of EB are missing type VII collagen – a protein that allows the top layer of skin to bind with the bottom layers.
The slightest movement causes the skin to constantly and consistently fall off.
EB is rare, with just one in every 50,000 children in the US diagnosed with the condition, according to Stanford Children’s Health.
Because it is an inherited disorder, Maldonado and her husband, Marvin Gray, 34, are currently undergoing genetic testing for the condition, reported the Express-News.
‘It could be two to three weeks before they have an answer,’ Maldonado told the newspaper. ‘They don’t want to treat my son for the wrong thing.’
The couple is hoping for some form of treatment but EB currently has no cure.
Ja’bari’s new medical team is treating him with pain medication and frequent bandage wrappings that are changed.
His condition has improved. He weighed just three pounds at birth and now weighs about eight pounds.
But he is suffering from complications. Though skin has started to grow in some area, his fingers and toes became fused during his time in the NICU. Additionally, his chin became fused to his neck.
His parents had him transferred to Texas Children’s Hospital in Houston, where doctors believe he was misdiagnosed and believe Ja’bari has has epidermolyosis bullosa, a rare genetic disorder that causes the skin to blister and burst. Pictured: Ja’bari in March 2019
Skin grafts have been planned to cover areas where skin hasn’t grown yet and to separate Ja’bari’s neck from his chest after they fused together. Pictured: Ja’bari in March 2019
‘Now he has another challenge to conquer which is his breathing, because [his airway] is completely bent in half…just because it’s fused together,’ Maldonado told Eyewitness News.
However, a team of specialists met Ja’bari’s parents on Monday to discuss the surgeries they are planning.
They plan to make a small incision under the baby’s throat that will hopefully remove the scar tissue that caused the neck to fuse to the chest, reported the Express-News.
Once he heals from that surgery, doctors plan to perform skin grafts on Ja’bari’s torso, arms and legs.
Maldonado said she doesn’t know how long Ja’bari will remain at TCH, so she and her husband may have to temporarily relocate.
‘Even if he does pull through, we don’t know what the future holds,’ she told the Express-News. ‘We’re just praying every day. Every day is a blessing.’
The family has set up a GoFundMe page to help cover the cost of Ja’bari’s medical bills and other specialized medical equipment he will need once he is discharged.
So far, more than $23,800 has been raised out of a $50,000 goal.