A Blessing In Disguise

When someone starts slurring their speech and says the right side of their body is numb, what comes to mind?

Now, what if that person is a healthy teenager?

For Jay Chandrasekhar, walking into his 15-year-old son’s bedroom one afternoon and seeing him appear to suffer from a stroke was alarming. Then, as quickly as the symptoms had appeared, they vanished.

“It was all so strange. One minute, he was having trouble getting words out, then the next he was saying he was fine,” says Jay. “I called our pediatrician who said, ‘Get him to an emergency room immediately.’”

At a nearby hospital, Will underwent an MRI that revealed two surprising findings: a significant blood clot in his brain and a cyst that had likely been present since birth. Doctors were perplexed. The amount of fluid in the brain didn’t match up to the normal teen in front of them.

Seeking the best care

Unknown to Will’s parents, Jay and Susan, their son had been born with an arachnoid cyst, a benign cerebrospinal fluid-filled sac that forms on a thin membrane covering the brain and spinal cord. Many people don’t experience symptoms and live their entire life without knowing they have a cyst.

That was the case for Will—until a fateful incident during a high school lacrosse game in February 2020. As an offensive attackman, he had been barreling through the defense and scored two points. Then, on his third shot, just as the ball was landing in the goal, a player on the opposing team checked him in the chest. The impact caused Will to fall and hit his head.

After that trip to the ER and the brain scan, the strange symptoms started to make sense. An arachnoid cyst gets its name from the spider web appearance of the network of blood vessels that stretches over the sacs.

Trauma to the head—like a sports injury—can cause a vessel to tear and bleed into the cyst, and the buildup of pressure can irritate the brain, including parts that control speech and movement.

When doctors at the local hospital mentioned the possibility of surgery, Jay called Susan. “She told me that we needed to go to Children’s Hospital. I was thinking, what? No! We’re already here and it’s about to happen,” Jay recalls.

But Susan was firm on having Will transferred. She had heard from friends about Mark D. Krieger, MD, Senior Vice President and Surgeon- in-Chief at Children’s Hospital Los Angeles—a renowned pediatric neurosurgeon whose specialties include intracranial cysts like the one Will had.

‘Back to his life’

In the Neurological Institute at CHLA, Will was monitored overnight before being wheeled into the operating room for a four-hour surgery. Dr. Krieger and his team first opened Will’s skull to start draining the blood and fluid that had been accumulating, then began the delicate work of creating small openings in the inner walls of the cyst.

“Arachnoid cysts are plastered onto the brain, so you can’t just take them out,” explains Dr. Krieger, the Billy and Audrey L. Wilder Chair in Neurosurgery. “With the holes in the walls of the cyst, the fluid can flow into the natural pathways of the brain and won’t accumulate again.”

Will recovered for four days at CHLA, where “every doctor, every nurse we encountered earned our trust, respect and deep gratitude,” says Susan. “Our uncertainty and worry were met with the staff’s unrivaled experience, steady confidence and deep kindness.”

The Child Life team also played a key role in Will’s health journey. It had been a few years since Will built a Lego set— something he loved doing as a kid—so when a Child Life specialist brought him a box, the distraction and familiarity of the plastic blocks helped him through some challenging moments of his recovery.

“We were beyond grateful that he was alive and seemed like himself, and with guarded optimism we began to think about how he might be going forward,” says Jay. “Will never missed a beat. He emerged from surgery his usual easygoing, happy self—ready for a big meal and to get back to his life.”

Sharing the support

That gratitude prompted the Chandrasekhars to pledge their support for Children’s Hospital and the Neurological Institute. On Thanksgiving 2020, the family launched their first online fundraising page, raising more than $15,000 in donations from their circle of friends and family. Will and his sisters, Ella and Janie, also joined the Junior Ambassadors program at CHLA to lead their own fundraising efforts.

“This experience was at times pretty scary. But the connections I made with the nurses and doctors put me at ease,” says Will. “I learned a lot about how to face the unexpected, and I want to give back to CHLA so other kids know they can handle it too.”

These days, you can find Will, 17, a budding filmmaker following in his dad’s footsteps, working on animation, hitting the golf course, volunteering as a math tutor, or at the Hollywood Bowl, where he works part-time as an usher. Giving up lacrosse after surgery was tough, but Will chooses to focus on the positives.

“It’s strange to say but if it hadn’t been for the incident during the lacrosse game, we wouldn’t have found the cyst and met Dr. Krieger. The cyst would have just continued to grow and cause much worse problems,” he says. “It’s interesting that such a low point in my life would turn out to be a blessing in disguise.”

‘Team CHLA’

At Will’s one-year follow-up, an MRI scan showed his brain had recovered and there was no new bleeding. Although arachnoid cysts can’t be removed completely, the brain typically forms around the residual tissue, and all signs point to Will being able to lead a normal life, according to Dr. Krieger.

“We will always be grateful to Mark, his team and the hospital,” says Susan. “Being at a child-centered hospital made all the difference.”

Looking ahead, the Chandrasekhars say they will continue raising funds for Children’s Hospital Los Angeles. “It’s a way to give back for all that we’ve been given,” Susan says. “We’re Team CHLA and plan to be involved with the hospital forever.