Teen overcomes rare brain condition after neurosurgery at Inova

It was an ordinary summer evening when 16-year-old Henry came down with a pounding headache. No one knew it at the time, but that headache would change the course of Henry’s life.

That night, Henry began a year-long journey that tested the limits of his grit and determination. Henry’s story is one of resilience, hope, family and the power of the right medical team.

Trip to the ER

Mark wasn’t alarmed when his son, Henry, complained of a headache in June 2023. Henry had bumped his head the night before, so he was probably a little sore. Mark gave Henry some pain reliever, and Henry retreated to his room.

A few minutes later, Henry emerged from his room and asked for a pain reliever — again. Then he began vomiting.

Mark rushed Henry to Inova Mount Vernon Hospital’s emergency department. “A CT scan revealed that Henry had a severe brain bleed,” recalls Henry’s mother, Beth.

Henry passed out from the pain, and the medical team inserted a breathing tube and emergency IV medications and fluids. Recognizing that he needed advanced neurosurgical care, the team rushed Henry to Inova Fairfax Medical Campus. At Fairfax, the emergency team quickly performed a burr hole procedure — surgery to drain cerebrospinal fluid to relieve pressure on his brain. Then, they called in the pediatric neurosurgeon team, which included Leon Moores, MD.

Getting a diagnosis

“When Henry arrived at Fairfax, our team needed to determine where the bleeding was coming from as quickly as possible,” says Dr. Moores. “We performed a CT angiogram, which provides highly detailed images of the blood vessels in the brain.”

The scan showed that Henry had an arteriovenous malformation (AVM) in his brain. An AVM is a group of abnormal blood vessels resembling a bird’s nest. This tangle of arteries and veins can develop a weak spot that eventually ruptures and bleeds.

Henry was likely born with this condition, but without imaging tests, there was no way to know he had it. “AVMs are rare, and the first symptom is often sudden bleeding,” explains Dr. Moores.

With 24-hour care in the intensive care unit (ICU), Henry was slowly recovering. But he needed surgery to remove the AVM, and no one knew whether he had suffered any brain damage. “We knew our son had kissed death that night,” Beth says.

Meeting Henry’s neurosurgeon

A few days into Henry’s ICU stay at Inova L.J. Murphy Children’s Hospital, Beth and her sister, Dawn, were keeping watch at Henry’s bedside. They heard a tap on the door, and in walked Dr. Moores. Though he had been watching Henry’s progress over the last several days, the family hadn’t met him yet — or so they thought.

Before Dr. Moores could introduce himself, Dawn jumped out of her chair. “Leon!” she exclaimed. Beth turned to her sister with a bewildered expression. “Turns out that Dawn worked with Dr. Moores years ago at Walter Reed Army Medical Center,” Beth says. “She was a nurse, and he was an attending neurosurgeon.”

Dr. Moores’ brother also worked with Henry’s grandfather in the army, so the family had two unexpected connections with him. “It was like Dr. Moores was meant to be Henry’s neurosurgeon,” Beth says. “From that moment, I knew he was the one who would bring Henry through this.”

Though the family was anxious for surgery, Dr. Moores explained that Henry needed several weeks to heal. “Henry’s brain was swollen from the bleeding, and it’s often better to wait until the swelling has subsided,” Dr. Moores explains. “I was confident we could safely remove the AVM in a few weeks.”

AVMs are rare, so many hospitals don’t perform a high volume of surgeries to remove them. And it’s even more rare to find an AVM in a child, so pediatric neurosurgeons generally see them less than adult neurosurgeons do.

Fortunately, the team at Inova is very familiar with AVMs and similar vascular conditions. “Our pediatric and adult neurosurgeons often work together, so we see a high volume of rare conditions like AVMs,” says Dr. Moores. “Our combined approach gives us an uncommon level of pediatric neurosurgery expertise.”

ICU and rehabilitation

Henry’s first days after the brain bleed were some of his most challenging. Henry’s oldest brother sat at his bedside in the evenings so their parents could rest. After three weeks, Henry was well enough to leave the ICU for acute rehab care.

Henry spent three more weeks regaining his strength and abilities in intensive neurorehabilitation. He was discharged from his rehab care early because he was working so hard. “Henry has short-term memory loss from the brain bleed, so he began journaling to help him remember things,” Beth says. “He wasn’t going to let this condition hold him back from anything. And he still journals every day.”

Neurosurgery and return to life

The day of the surgery arrived. “We were nervous, but Dr. Moores is so warm and confident,” says Beth. “He’s exactly the person you would want operating on your child.”

After about six hours, Dr. Moores came through the waiting room doors. “He looked at us, immediately smiled and gave us the thumbs-up,” Beth recalls. “He didn’t even give us a millisecond to worry before he told us everything went perfectly. I broke down and cried.”

Looking at Henry today, you’d never know what he has overcome. His surgical scar, which Beth describes as “perfect and neat,” is barely visible. After four months of homebound school, Henry went back to full-time high school. He’s back to getting straight A’s and wants to become a neuropsychologist. Though some short-term memory loss remains, Henry works hard to conquer it in school and daily life.

“We’re so lucky that we were in the hands of such an amazing medical team,” Beth says. “Every nurse, aide and physician we encountered at Inova was top-notch. What Henry went through was so difficult, but he is always motivated to get better. Henry can be anything he wants, and I’m forever grateful to Dr. Moores and his team.”