A 10-month-old baby boy born with a rare disease that left him without any skin can now be kissed and cuddled by his mother after new skin was grown for him in a laboratory.
Ja’bari Gray was born on New Year’s Day in San Antonio, Texas, with his eyelids, hands and feet 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 Maldonado 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.
Doctors had skin grown for him in a laboratory in Boston that specializes in burn victims then had his new skin flown to Texas for transplant, reported KTRK.
His family says they are so excited that they can finally hold and touch Ja’bari for the first time.
Ja’bari Gray, 10 months, was born in January 2019 in San Antonio, Texas, with almost no skin below his neck (left). Thanks to a skin transplant over the summer, he’s now able to wear clothes for the first time (right)
Doctors diagnosed the Ja’bari with aplasia cutis congenita, a condition in which there is the absence of skin at birth. Pictured: Ja’bari being held by this mother after his skin transplant
‘Now you can kiss him, touch him, do all that stuff,’ Maldonado, Ja’bari’s mother, told KTRK. ‘He got to wear his first set of clothes now, so he’s getting there.’
She says Ja’bari’s transplant is the first of its kind that’s ever been done for such a young child with his condition.
Maldonado said she was so excited to hold her son and have skin-to-skin contact for the first time.
‘It was heartwarming, because he was crying when he was laying down,’ she told KTRK.
‘But as soon as I picked him up and had the skin-to-skin contact and put him on my chest, he just stopped crying.’
Maldonado 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 the skin is missing in patches that that resemble lesions or open wounds, occur on the scalp, but can also be found on the torso and limbs.
Ja’bari was placed on life support and doctors told his parents there was nothing more they could do. Pictured: Ja’bari with his mother, Priscilla Mondalo, in April 2019
Ja’bari (pictured) was transferred in April to Texas Children’s Hospital in Houston, where doctors believe he was misdiagnosed
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, and they believe he would die, the couple petitioned a transfer to Texas Children’s Hospital (TCH).
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.
‘It’s very amazing. It’s just powerful how one word changed this whole scenario for the best for my son,’ Maldonado, 25, told the San Antonio Express-News.
After examining Ja’bari, staff at Texas Children’s suspected that the 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.
Doctors at Texas Children’s believes he has epidermolyosis bullosa, a rare genetic disorder that causes the skin to blister and burst. Pictured: Ja’bari in March 2019
Skin was grown for Ja’Bari in a laboratory in Boston and his brother and sister are now able to touch him for the first time (pictured)
Ja’bari’s condition has improved following the skin transplant. He weighed just three pounds at birth and now weighs about 18 pounds.
He is also no longer taking pain medication and is able to breathe on his own, reported KTRK.
However, his eyelids, right hand and right foot remain fused together and will need to be surgically separated.
Maldonado said she still considers every day a blessing.
‘Making coo sounds that normal babies would do, he’s interacting with us,’ she told the station. ‘Even though he can’t see us and stuff, he’s still interacting.’