“I was definitely terrified for my life”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Hannah DeLong was just 15 when she faced a life-threatening illness.

“I was definitely terrified for my life,” the soon-to-be 18-year-old from Garrett, Indiana, said of the experience that shaped her teen years.

It started with headaches that she likened to migraines, “but 10 times worse.”

They lasted much of the summer in 2022, recalled her mom, Erin Reynolds. Hannah has worn glasses since kindergarten, so Reynolds took her to the eye doctor first.

As the headaches persisted, doctors suspected a sinus infection.

When Hannah asked to stay home from school one day, Reynolds knew something was definitely wrong.

“She never misses school. I had to demand answers.”

After visits to other medical providers and hospitals, where Hannah was diagnosed with obstructive hydrocephalus, Reynolds ultimately took her daughter to the emergency department at Riley Hospital for Children, nearly three hours from her home.

“My mom gut kicked in,” Reynolds said, adding that it was her husband, Arthur, who first noticed that one of Hannah’s eyes seemed to be drifting inward. “Something else was going on.”

Hannah had cerebrospinal fluid on her brain that needed to be drained, but the “something else” turned out to be a tectal plate glioma, a slow-growing, low-grade brain tumor that typically occurs in a region of the brain responsible for visual and auditory reflexes.

The hydrocephalus she was suffering is secondary to her glioma, but it is what needed to be addressed immediately, so Riley neurosurgeon Dr. Jignesh Tailor implanted a programmable shunt in Hannah to automatically drain any fluid buildup.

Since then, Hannah says she has felt like herself again, even while the team at Riley continues to monitor the tectal plate glioma and incidental lesions throughout her brain in its nonsurgical surveillance clinic.

While the glioma tumors don’t usually grow, they must be monitored, said Kelsey Knight, nurse practitioner in the pediatric neurosurgery department at Riley. She and oncologist Dr. Scott Coven run the surveillance clinic.

“Typically, we try not to operate in the tectum because it can cause nerve deficits and can impact vision,” Knight said. “But the biggest problem they cause is the obstructive hydrocephalus. They block the pathway of the cerebrospinal fluid. That’s why she required the shunt.”

Hannah, described as “truly an amazing kid” by Knight, chose to come forward with her story as a way to help other families and kids dealing with hydrocephalus and other medical challenges. She also wants to show her love for Riley.

“I wanted to raise money for Riley because they changed my life in so many ways,” the high school senior said.

Her fundraising at school led to her being named Riley prom queen this year, and she has pushed herself to speak about her experience in school assemblies.

“It was scary, but it was really cool sharing it,” she said. “Everyone was so confused about what happened to me.”

Today, Hannah is back to full strength, working and finishing up school. She plans to work as a cosmetologist after graduation.

The frequency of her return visits to Riley for MRIs has slowed from every three months at first, to six months, and now to yearly visits to ensure there has been no growth or change in the glioma.

“We continue to follow her for the time being,” Knight said, just as they do with about 150 patients in the surveillance clinic.

Eventually, Hannah will transition to the adult side for her hydrocephalus, but she should be able to graduate from surveillance if all of her lesions stay stable, Knight said.

“She’s come a long way. Early on, they were so anxious, and rightly so,” Knight said. “That whole process was really scary, but now three years later, she’s doing all these great things. It goes to show that this doesn’t have to define her.”

The experience was a hard one, for sure, Reynolds agreed, but “I feel like Riley did an amazing job figuring out exactly what was wrong and what she needed. They were amazing with her care. Things could have gone south pretty easily had we not gotten the care we did.”

As she has become accustomed to the shunt in her head and the need for vigilance going forward, Hannah said the health scare has changed the way she thinks.

“I live life regularly but with caution,” she said. “This experience was an awakening for me to keep living my life.”