Having a child with complex medical needs is a stressful experience for parents. And when you put your child’s care in someone else’s hands, it’s even more stressful. The parents of a Virginia girl are trying to piece together their daughter’s death after her feeding tube became dislodged at school.
Now, the family is looking for answers as they mourn their child. For its part, the school is cooperating as well, but there’s still a long road ahead.
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Four-year-old Faith Johnson died at UVA Health University Hospital in Charlottesville on February 22, 2025, after being admitted on February 18. The girl had been born with Cockayne syndrome, a rare genetic disorder, The Winchester Star reported. Cockayne syndrome causes premature aging, sensitivity to light, and dwarfism, among other complications. As a result of her condition, the girl had to be fed via a feeding tube.
According to the girl’s parents, Faith was a student at Northwestern Regional Education Programs. Faith’s parents, Danielle and Bryon Johnson, claim that her feeding tube became dislodged while she was at the school, creating the health complications that led to her death.
“We still don’t know exactly what happened,” Danielle Johnson told Fox5 DC. “They’re still investigating. We only got bits and pieces of the story, and so we’re still waiting for a full investigation.”
Bryon Johnson shared an incident report with The Winchester Star that showed something happened after the girl was fed that morning. It was confirmed that her GJ tube, also known as a “G-tube” was in place during the feeding.
After the feeding, a staff member took Faith in her stroller for a diaper change. The staff member undid the stroller straps, and “attempted to lift Faith but felt resistance.” While untangling the straps, the staff member held Faith up, and didn’t realize that her feeding tube had become detached.
According to the report, a nurse said, “Oh my gosh, the tube is out, the whole tube is out.” The nurse confirmed that the tube “was completely removed from Faith’s stomach” before getting Danielle Johnson, who had arrived to pick her daughter up, and calling an ambulance. At the time, no one could explain how the tube became detached, Byron Johnson told the outlet.
Danielle sent her older daughter Makayla, to their home to get a sterilized tube. By the time the paramedics arrived, they had successfully changed Faith’s tube. They thought everything would be OK. Soon after they returned home, they had to rush their daughter to the hospital.
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It wasn’t until then that they learned that the tube had dislodged while getting Faith out of the stroller. “That was never conveyed in the moment … which … kind of delayed what we needed to do,” Bryon Johnson said.
Danielle Johnson had warned the school several times about the importance of keeping Faith’s feeding tube inside her clothes, she said. She understood that getting the tube tangled could be dangerous for her daughter. And it allegedly was.
“This situation caused my sister’s life. Just tucking in the tube in her pants caused her life,” Makayla Johnson told Fox5 DC. “She was not supposed to go this way,” Danielle Johnson added.
