In 2023, Easter Sunday at Noelle and Doug’s house was going the same way it had every other year. They spent the morning watching their three children hunt the yard for colorful eggs. Then they began getting ready to go to a family gathering. That's when they noticed something odd about their 10-year-old son Nathan. When Noelle asked Nathan to get his shoes on, he just stood in the kitchen staring into space, mumbling and drooling. His lips were blue, and he was unable to form words.

Nathan had just eaten a ton of candy, so at first, Noelle and Doug thought he was suffering from a sugar rush. But when the episode lasted about 30 seconds — which felt like an eternity — they panicked.

They called their pediatrician, who said it sounded like Nathan had suffered a seizure. He told them to keep a close watch on Nathan and bring him in for an appointment first thing in the morning.

The next day, after a routine neurological work-up, the pediatrician referred the family to the Neuroscience Center at Children’s Hospital of Philadelphia (CHOP) for a more thorough evaluation. The family lives in Chester County, Pa., about 45 minutes outside Philadelphia.

At CHOP, they met with pediatric neurologist Marisa S. Prelack, MD, who specializes in epilepsy. She evaluated Nathan and diagnosed him with focal epilepsy, which is characterized by seizures caused by abnormal electrical function in one region of the brain. Noelle took the news hard, but Dr. Prelack’s knowledge and expertise reassured her. 

Noelle and Doug felt fortunate to live so close to CHOP because they knew Nathan was in the best hands. CHOP’s Neuroscience Center consists of a large interdisciplinary team of pediatric neurologists, neurosurgeons, epileptologists, fellows and residents, among others, who work together to determine the best path for each patient.  

Drug-resistant seizures

Dr. Prelack prescribed anti-seizure medication, but Nathan continued to experience multiple seizures a day. He was diagnosed with drug-resistant epilepsy. In these cases, surgery is the only way to stop seizures.  

Nathan underwent a magnetic resonance imaging (MRI) scan and an electroencephalogram (EEG). The EEG showed the seizures were coming from the left temporal lobe, and the MRI revealed what was causing them: a tumor in that same region.  

Dr. Prelack reviewed the results with the Neuroscience Center team. They agreed the tumor was most likely benign. This meant if it was surgically removed, it wouldn’t come back, and the seizures would also stop. Pediatric Neurosurgeon and Director of Epilepsy and Functional Neurosurgery Benjamin Kennedy, MD, thought Nathan was a good candidate for epilepsy surgery.  

Prolonged exposure to seizures can affect the brain and result in cognitive decline, in addition to disrupting a person’s life. In epilepsy surgery, the part of the brain causing seizures is removed or disconnected to stop seizures. The goal is to protect the healthy parts of the brain by removing the seizure-producing parts.  

Dr. Kennedy met with Nathan and his family to explain the surgery. He said while epilepsy surgery can often improve a child's mental function, there can also be some side effects with memory, learning ability and verbal recall.  

“Dr. Kennedy was so thorough,” says Noelle. “He explained things in a way that was understandable to a lay person that's not a brain surgeon, which really helped. His level of competence was really comforting.”  

“That really made everything a lot easier for Nathan, which is a true testament to how wonderful the doctors and the staff are at CHOP,” says Noelle. “There was never a time where [Nathan] didn’t feel at ease. 

Nathan and Dr. Kennedy formed an immediate bond over their height and love of sports. Dr. Kennedy is 6’7,” the height Nathan’s pediatrician has projected he’ll be once fully grown.  

Preparing for and performing epilepsy surgery 

Nathan was admitted to CHOP’s Epilepsy Monitoring Unit (EMU), a special wing of the hospital where each room is equipped to do state-of-the-art continuous EEG monitoring, so doctors can record brain activity day and night and capture seizures as they happen. Dr. Kennedy placed electrodes into Nathan’s brain using a robotic surgical assistant, a procedure called stereo-EEG or sEEG.  The robot provides accuracy, efficiency and stability as Dr. Kennedy places the electrodes through two-millimeter incisions. 

Nathan stayed in the EMU for eight days so the team could capture brainwave data when he had a seizure. This information allows the clinical team to pinpoint which brain regions are part of the seizure onset zone so they can spare as much of a child’s healthy brain as possible during surgery.  

CHOP is a national leader in advanced epilepsy care and treats thousands of patients each year. The Neuroscience Center team creates a customized care plan for each patient using a wide range of techniques. This is important because every patient's brain and epilepsy are different. 

If the tumor was found to be the sole source of the seizures, Dr. Kennedy thought he might be able to use a cutting-edge technique in which he operates through a small eyelid incision. But Nathan’s EEG results showed his seizure network was more extensive than just the tumor.  

Dr. Kennedy performed a four-hour surgery, successfully removing the entire tumor and the other areas that were part of the seizure onset zone, including some of the lateral temporal cortex, the amygdala and the hippocampus. 

Nathan is doing amazing

It was a stressful few months until the time of brain surgery. Noelle and Doug were constantly on edge, worried Nathan might have a seizure at any moment. To everyone’s relief, Nathan, now 13, hasn't had a seizure since surgery. 

“We're very, very pleased with it,” says Dr. Kennedy of Nathan’s outcome. “Seizures can be a very debilitating disease, and when you can take that away, it's extraordinarily rewarding.” 

Nathan has small setbacks every now and then with his memory and verbal recall. But he’s doing as well as they had hoped ... and then some.  

"We're feeling good about where he is right now,” says Doug. “Every little milestone is a new relief.” 

What makes Doug and Noelle happiest of all is seeing Nathan back to being the exuberant, active kid he was before the ordeal. Nathan can once again put energy into the sports he’s passionate about — basketball, flag football and street hockey — and the Philly sports teams he loves cheering on. 

“Some days, I'll just look at him and cry because I’m just so thankful that he is where he is,” says Noelle. “He's come out of this surgery and, for all intents and purposes, has not missed a beat. We are so grateful to the doctors and the nurses and just everybody across the board that we have interacted with at CHOP. They were fantastic.”