Cerebrovascular Disease and Stroke Center

Patient Stories | Julianne and Cavernous Malformation

Julianne’s Journey to Recovery After Blood Vessel Bursts in her Brain

As the morning went on and Julianne grew increasingly unsteady, her mother, Brianna, grew increasingly worried. After waking up with trouble walking on her right leg, the happy, healthy 3-year-old couldn’t use her right hand to grasp her milk cup at breakfast. 

Brianna knew something was wrong and took her daughter to the nearby children’s hospital where they lived in Tennessee. Doctors ordered a CT scan to check for signs of a possible stroke.

What they found instead was what looked like a mass in Julianne’s brain. An MRI confirmed the mass was a cavernous malformation, which is an abnormally formed blood vessel that had ruptured and bled.

“Hearing the news that your child has a mass on their brain, it’s like living a nightmare,” Brianna said. “It’s shocking to learn that you’ve had no idea what was happening inside of them.”

Julianne stayed in the hospital for four days before she was sent home with steroids and a plan to follow up with physical and occupational therapy. But just a week later, Brianna and Greg had to rush her back to the hospital. 

“She was getting worse,” Brianna said. “She couldn’t stay awake. She was lethargic, and she was walking even more unsteadily.”

A repeat MRI found Julianne had experienced more bleeding in her brain.

That night in the hospital, Julianne “went downhill really fast,” Brianna said. By the next morning, she was unable to hold herself up and, by the afternoon, she was in a coma and had to be supported by a ventilator. 

“We knew she was passing away,” Brianna said. “I was watching my child slip away right in front of me and couldn’t do anything about it. It was the worst day of my life.”

Arriving at Cincinnati Children’s for Lifesaving Surgery

Julianne’s doctor in the pediatric intensive care unit called Cincinnati Children’s, and Brianna and Julianne were quickly driven by ambulance from Tennessee to the Burnet Campus.

Sudhakar Vadivelu, DO, director of the Cerebrovascular Disease and Stroke Center and neurosurgeon in the Division of Pediatric Neurosurgery, remembers meeting Brianna and her husband, Greg, for the first time.

“They asked what my thoughts were on palliative care because they thought nothing could be done to help Julianne,” he said. “I was taken aback by that because I thought their goal in coming here was for treatment. I told them I thought Julianne could recover.”

Dr. Vadivelu put Julianne on a medication that would help prevent more bleeding, then scheduled a surgical procedure to remove the blood and cavernous malformation from her brain.

“He was very personable and such a comfort to our family but also very honest about the risks,” Brianna said. “We knew he was very well trained and had full trust in him to do the surgery.”

The procedure lasted almost eight hours, but it was successful. Julianne was able to come off the ventilator the next day and begin the process of getting better.

Regaining Function Through Rehabilitation

Over the next two months, Julianne recovered at Cincinnati Children’s. She started learning everything over again, which, at the beginning, didn’t involve much more than figuring out how to open her mouth and swallow a little bit of water from a spoon. Her care team included J. Michael Taylor, MD, a pediatric stroke and neurocritical care specialist in our Division of Neurology, and Nathan Evanson, MD, PhD, from the Division of Rehabilitation Medicine.

Krista Perkins, MS, CCC-SLP, a speech-language pathologist, met Julianne about a week after her surgery to begin working with her on feeding and speech goals.

Once she’d improved enough, Julianne was moved to the rehabilitation unit of the hospital. Her parents requested Krista continue working with Julianne because she’d developed a good relationship with their daughter. 

“You could tell Krista really cared about Julianne,” Brianna said. “You could tell they all did.”

Krista credits much of Julianne’s progress to her parents’ involvement. 

“They would always read to her, engage her in play, make her use her words to request something,” Krista said. “That had such a positive impact on her improvement.”

Julianne went home to Tennessee in the middle of May. She continued with speech therapy until October, when her skills caught up to her age level, and with physical therapy until December.

“She relearned how to walk, run and even jump a little bit,” Brianna said. “She struggles with going up stairs still. But she can walk, talk, and eat. The only thing she’s still working on is grasping things with her right hand and lifting her right arm all the way up, so she’s still doing occupational therapy. Eventually, I think she’ll graduate from that.”

‘The Sky’s the Limit’ for Recovery

Dr. Vadivelu says Julianne’s progress has been remarkably fast, but he isn’t surprised by the recovery.

“I’m lucky and biased because we have a cerebrovascular program that sees kids like Julianne fairly regularly, meaning we know how to help them,” he said. “We have a team of individuals who study this disease, who are knowledgeable about it and who do a good job of taking care of it. That’s why we were able to treat this lesion that was thought to be inoperable and get Julianne home.”

Julianne has seen Dr. Vadivelu and her rehabilitation providers twice since May—once in June and again in October—for follow-up MRIs. While Brianna says Dr. Vadivelu couldn’t say for certain whether Julianne would completely return to her previous level of function, he did tell her the sky’s the limit for Julianne’s recovery, noting that because she’s so young, she has plenty of time for her brain to relearn new pathways. 

Julianne’s young age also inspired Brianna to write a book about the experience, so Julianne can read it when she’s older. Brianna published My God Is So Big: JuJu’s Story in September.

For now, Brianna is focused on Julianne’s future, which she hopes will include starting kindergarten in the fall, and getting back to regular family life.

“We left Knoxville with a very different girl than we brought back,” Brianna said. “We had to teach our little guy to be gentle with her, but they’re getting back to doing what they used to do—running around and chasing each other.”

(Published February 2024)