A baby born skinless fights against its staggering odds, and it wins. He was born without skin on January 1, 2019, covering only his legs and head. His parents wonder if they will have to plan his funeral when he leaves hospital 11 months after he was born.
The disease, known as epidermolysis bullosa, is a connective tissue disorder that occurs in about 20 newborns per million people in the United States. Up to 20% of these babies die from blistering, which affects their ability to eat and breathe. In the first few weeks of his life, Ja’bari was dead, but doctors were able to revive him.
His parents, residents of Houston, Texas, were braced for the worst. Priscilla Maldonado, his mother, 25, admitted planning and organizing his funeral. ‘When he was three months old we were planning the funeral and they [the paramedics] gave him a chance and he jumped the whole hurdle and they were amazed. It worked much better than I expected, “she said. Eleven months later, she was overjoyed to bring her son home.
When he was born, he weighed three pounds without skin on his neck, arms and thighs. It’s not only that he didn’t get eyes, but the fuses were closed and his neck was hanging from his chest. His arms were fused and he was bent at the elbow and his fingers and toes did not form. Doctors rushed into surgery to stop this part of the body from further fusion. “I saw the flesh for the first time. You could see his veins, everything was exposed. Everything was quiet, where there should have been a baby’s cry.
To treat him, they used his cells to create a growing leaf of skin, a process used to treat burns victims. He underwent two major skin graft operations, both unsuccessful, to open his eyes.
The mother opened a GoFundMe page after her health insurer refused to pay for his transfer to another hospital for better treatment. The hospital where he was born, Methodist Children’s Hospital, said they can nothing do about the baby. According to Lindsey Fox, a spokeswoman for Texas Childrens Hospital, a team of experts, including a plastic surgeon, dermatologist, otolaryngologist, neonatologist, intensive care physician, ophthalmologist and neonatologist, will take care of babies’ complex needs. She added that the baby may soon be able to go home but will need further treatment before moving. On the GoFundMe page, the mother described the terrifying experience in detail.
“My whole pregnancy went well until the ultrasound showed it had not increased in weight and they decided to induce me at week 37. I went to be induced the morning and his heart rate fell, and they finally did an emergency C-section and when they pulled him out, they noticed that he was born without his skin and his eyes closed and needed surgery to open them up.
He needed a ventilator to breathe for him, he was passed away twice, until the doctors could bring him back. He was born weighing just under three pounds.
A successful fundraiser enabled him to be transferred to Texas Childrens Hospital, where he received his life-saving treatment. He is now covered with skin and can breathe independently. The skin disease he suffers from, is rare, and doctors find it difficult to treat it with little information.
Priscilla was overjoyed to be home with the baby for the first time in real baby clothes. It felt like having a baby and being able to take it home, she said. It was like a dream come true. Ja’bari’s name means fighter or brave in Swahili, so he fits.
They celebrated his first birthday at home with a baby shark party. But it was more than just a birthday. It was a celebration of his life, of who he is, what his parents and doctors have done, and the fight for his life.