It was just over a year ago when cell phone video captured the moments before life would change for 14-year-old Ashley and her family. The video shows Ashley in her element at a volleyball game with her Osceola Fundamental High School Warrior teammates.
She slammed the ball over the net. No one could possibly have guessed a serious medical event would follow that moment.
“The only way I can describe it is that all of a sudden I felt like everything above my shoulders was going to explode,” Ashley says. “My body was shaking, and I didn’t know what to do.”
Her parents, Mark and Stephanie, saw the trainer motion to the couple to join them outside the gym area. Suddenly, Ashley did something out of character.
“She’s kind of a germophobe,” Stephanie says. “But she literally lies down on this public school floor, and that is very unlike her.”
Thinking she may have a severely pinched nerve, the family took her home, where she took a hot bath and tried to rest. But Ashley didn’t feel right, and she was turning pale and ashen. When her parents rushed her to an emergency center near the family’s home, a CT scan revealed that Ashley had suffered a life-threatening brain bleed. Ashley was rushed to Johns Hopkins All Children’s Hospital.
Ashley was diagnosed with arteriovenous malformation (AVM), which occurs when arteries and veins don’t form correctly in an area of the body. The blood vessels can rupture and sometimes cause impairment or death.
“AVM’s are extremely uncommon in children,” says George Jallo, M.D., a pediatric neurosurgeon and medical director of the Institute for Brain Protection Sciences. “We expect that people are born with them or develop them, but it’s more commonly presented in people in their 30s or 40s.”
Brain bleeds resulting from AVM’s can be unpredictable, so the team remains prepared to respond to any problems that may arise.
“It was such a shock,” Mark says. “We had gone from having a perfectly healthy, beautiful girl eight hours earlier to our child struggling for her life.”
A few days into her stay, Ashley’s struggle became more complicated. She showed signs of lethargy and developed hydrocephalus, a build-up of fluid in her brain. Jallo placed an external ventricular drain (EVD), allowing the blood and fluid to bypass the blockage.
Fifteen days later, Ashley was discharged from Johns Hopkins All Children’s Hospital.
A Year Later
As the year mark approaches, Ashley is doing well.
“September 28, 2020 was exactly a year ago; it’s crazy,” says Stephanie. “Ashley’s playing volleyball again and I wanted her to be able to do all she can do.”
She had radiation surgery to help shrink and eventually eliminate the AVM, which could take up to three years. Otherwise, she’s feeling great with the exception of manageable headaches treated with rest and acetaminophen. She’s also setting out to be an advocate for those with similar experiences with AVM.
“She is strong and determined, never makes excuses and has the best outlook,” says Stephanie. “I’m so proud of her.”
*Presented by Johns Hopkins All Children’s Hospital | Originally Published in November 2021