Nathan’s Story: Brain Surgery to Cure Seizures
Nathan’s Story: Brain Surgery to Cure Seizures
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.
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Noelle: Don't show those cards to anybody, Anna. They're secret. Okay. Just between me and you.
Nathan: Okay.
Noelle: I don't know if I've processed it. Sometimes I just look at Nathan and cry because I'm just so thankful that he is where he is.
Nathan really had no symptoms up until it was last Easter in 2023. He was standing right here in our kitchen where we're sitting right now, and I was talking to him and he kind of just stopped talking to me and was staring and mumbling and drooling, and his lips had turned a little bit blue The next day we had him into our pediatrician, and then they referred us to CHOP for evaluation at the neurology department.
Douglas: And it was probably the farthest thing on our minds as what it turned into.
Noelle: I hopped on that call by myself and I tried to, I tried to muck my way through it without crying on the phone with Dr. Prelak, and she said, "It's okay for you to cry." And she said, "He has a tumor that was located in his left temporal lobe." That was a tough day for me.
Benjamin C. Kennedy, MD: So Nathan came to see me for seizures. He was having sometimes, several a day that began with deja vu, which is a classic temporal lobe finding. On MRI, he was noted to have what appeared to be a tumor in his anterior left temporal lobe.
So 1% of the population has epilepsy and up to a third of those patients are not well controlled with medication. We see a lot of this at CHOP. In fact, this is the vast, vast majority of what I do.
We did something called stereo EEG, which is placing electrodes in a minimally invasive fashion into the brain to monitor very specifically all of the brain regions we thought were at risk of being part of his epilepsy network. When we did that, what he showed us was that, yes indeed, his entire hippocampus was part of the seizure onset zone, as was part of some of the lateral parts of the temporal lobe that did not appear to be tumor bearing on MRI.
Nathan: Last time it was better because I could actually, like, move around. Now I can, but there's like, this is way more stuff strapped, way more needles in my head.
Noelle: We have the best team at CHOP here, and the best care team, so we're pretty confident with their ability to get this out without any issue.
Benjamin C. Kennedy, MD: I think what we have at CHOP that's unique is we're doing a very high volume of advanced epilepsy care, and that it's all very individualized because every patient's anatomy and every patient's epilepsy is a little bit different.
Little bit of sleepiness is normal. Emotional lability, like feeling sad or feeling angry, those things are normal. Little bit of language difficulty, like what we call word finding difficulties, that's normal after a surgery in this location. That will improve.
Noelle: Feel good?
Nathan: Yep.
Benjamin C. Kennedy, MD: All right. Well, I'll get everything set up.
Noelle: Thank you.
Benjamin C. Kennedy, MD: All right.
I'll see you guys afterwards.
Noelle: Thank you.
Benjamin C. Kennedy, MD: The idea behind pediatric epilepsy surgery is we're trying to protect the healthy part of the brain from the unhealthy part of the brain. And as counterintuitive as it might be, removing the offending part of the brain generally actually improves cognition.
So this is Nate's temporal lobe, the left temporal lobe. It's not oriented the way you would typically see on an MRI. Flip it around so that it's like a surgical view. You can see here, this is the tumor or dysplasia, what have you. Here you can see it up here in the temporal tip. But what concerned me about Nate's workup is it looked like his left hippocampus is just a little bit smaller than the right, and that can represent something called mesial temporal sclerosis, which is a secondary phenomenon that is due to seizures and then also causes seizures on its own.
Because once you develop those hippocampal changes and you're getting seizure onset in the hippocampus, if you just take the tumor out, it's not gonna be enough.
The hippocampus and the amygdala are deep parts of that left temporal lobe. The left temporal lobe for the vast majority of people and almost all right-handed people like Nathan is involved in language processing, meaning both understanding and creating speech. And that's why we wanna make sure that we only take out what we absolutely need to to treat the seizures and leave everything else completely alone.
So the risks of this kind of brain surgery really come down to language function and verbal memory. These are the essential things that make us human. The ability to communicate with one another. So this is not something that we ever take lightly. Before we go under the microscope, certain parts of the case we wanna do, we establish our superior temporal sulcus.
Noelle: Nate was a brave kid, but this is a, this is an intense thing to go through at 10 years old, and he showed bravery that I don't think I've ever seen in any adult, let alone a 10-year-old child. And so he will forever be my hero.
Benjamin C. Kennedy, MD: Here's amygdala, but right above that is thalamus pallidus.
With these low-grade tumors
There we have it.
If you get the whole thing out and the MRI looks clean after surgery, the likelihood that it comes back is very, very low
Hello.
Noelle: Hi.
Benjamin C. Kennedy, MD: Hey, how you doing?
Noelle: Good. How are you?
Benjamin C. Kennedy, MD: Nice to see you.
Noelle: Nice to see you, too.
Benjamin C. Kennedy, MD: All right, so how have things been going?
Nathan: Good.
Benjamin C. Kennedy, MD: Yeah?
Nathan: Yeah.
Benjamin C. Kennedy, MD: Have you had any seizures?
Nathan: No.
Benjamin C. Kennedy, MD: No. How has your language and memory been?
Nathan: Good. Yeah.
Benjamin C. Kennedy, MD: Any problems at all?
Nathan: No.
Benjamin C. Kennedy, MD: How's it going in school?
Nathan: Good.
Noelle: He struggled a little bit with math last, but yeah, he's been doing well with school.
Benjamin C. Kennedy, MD: That's awesome.
Noelle: Teachers have been giving good reports, you know.
Benjamin C. Kennedy, MD: So yeah, that's great to hear. You got no seizures, you're doing well in school, back to your sports. Yeah. Feeling good, healed up well.
Nathan: Yeah.
Noelle: Mm-hmm.
Benjamin C. Kennedy, MD: Great. Yeah. Well, this just made my day. Seizures can be a very debilitating disease to have, and when you can take that away, it's extraordinarily rewarding.
The biggest factor is the impact epilepsy can have on patients' lives and the lives of their families. Everyone's epilepsy is a mystery, and so that's what's both, you know, intellectually stimulating, as well as really rewarding when you can help people with their seizures.
Douglas: Nathan right now has winter basketball on Sundays, flag football Friday nights, scouts Tuesday nights, plus, you know, camping, other activities here and there, which is nice.
It really feels like we're back to March of 2023 again before we knew any of all this.
Noelle: We've all been changed for the better from this. It was a hard experience. It was awful to go through. So now I think we appreciate life a lot more, but I hope that we're also teaching our kids how to really appreciate life and how to give of themselves to those who maybe are having a harder, a harder time than we had.
Nathan: Everybody that helped, Dr. Kennedy like everyone, thank you, like so much because like now I'm not having seizures. I don't have to take medicine and stuff. I'm like fine now. Like soon it'll be yearly checkups with the doctor. So it's definitely nice that CHOP did that for me.
Noelle: Well done, bud. You got more than one word answers this time.
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.”
Questions about Epilepsy Surgery? Get Answers from a Top Pediatric Neurosurgeon
Wondering if epilepsy surgery is right for your child? In our free FAQ guide, leading pediatric neurosurgeon Dr. Benjamin Kennedy, Director of Epilepsy and Functional Neurosurgery, answers common questions about surgery and treatment options with clarity, compassion, and expertise. Fill out the form to access expert insights and learn how earlier intervention can support better outcomes for your child.