Boy born without skin goes home
Infant has spent past 7 months at Texas Children’s Hospital
After spending nearly his entire first year of life in the hospital, Ja’bari Gray is finally home.
Born without skin on most of his body, the 10-month-old had spent the last seven months in Houston, receiving treatment at Texas Children’s Hospital. He was released Wednesday, nearly six months after an experimental skin transplant marked a turning point in his condition.
In the weeks leading up to Ja’bari’s release, Priscilla Maldonado, his mother, said she has been both excited and nervous. The only times her son had been outside were during his transport by ambulance and air from San Antonio to Houston on April 12.
“It’s kind of scary,” she said earlier this week.
For several days before his discharge, Ja’bari’s parents spent hours with him at the hospital, practicing taking care of him themselves without the assistance of nurses.
Texas Children’s did not make Ja’bari’s doctors available for interviews, but on Wednesday it released a statement that stated his complex needs were treated by a team of experts across the hospital, including neonatologists, plastic surgeons, dermatologists and specialists for the eyes and the ear, nose and throat.
“Though Ja’bari will require additional care in the future, we are glad he is able to go home with his family,” the statement said.
Ja’bari was born on New Year’s Day with a bewildering congenital condition that left him with fused eyelids and large swaths of skin missing from his arms, legs and torso. Over time, his fingers and toes fused together, and his arms became attached to his tor
so.
The baby, who only weighed 3 pounds at birth, was initially treated at Methodist Hospital in San Antonio before being transferred to Texas Children’s, where he underwent surgeries and received ongoing care.
During the first few months of Ja’bari’s life, his family was told by doctors to expect the worst. But in May, he underwent an experimental surgery in which labgrown sheets of his own skin were transplanted onto the open wounds on his tiny body. The skin was cultured in a lab from Ja’bari’s own biopsied cells by a Boston-area company that produces skin grafts for severely burned patients who lack enough healthy skin for traditional grafts.
The procedure was remarkably successful, Maldonado said. Afterward, Ja’bari steadily improved, gaining weight and color in his skin.
In September, after his breathing tube was removed, his family members were able to hold him, unencumbered by medical equipment or protective hospital gowns.
And they heard him cry for the first time.
Even with significant genetic testing, Maldonado said specialists have been unable to determine the cause of Ja’bari’s missing skin.
Tests ruled out several rare skin conditions, including epidermolysis bullosa, leaving the baby without a formal diagnosis.
After living in hotels for months, his parents and two siblings officially relocated in August to Houston. Their apartment is close to the Texas Medical Center.
The family plans to remain in Houston for the foreseeable future as specialists there continue to treat Ja’bari.
For the time being, doctors plan to leave Ja’bari’s eyes alone. Future procedures are expected on his fingers, toes and arms, his mother said.
The baby has been fitted with hearing aids, based on tests of his reaction to sounds; it’s possible that months of laying down led to a build-up of fluid in his ears, interfering with his hearing.
Throughout this year, Ja’bari’s parents have been stunned by their son’s resilience.
“The strength is amazing for that boy, to be able to do all that,” said his father, Marvin Gray.