By 9 months old, Nieko Julian of Vienna had survived more than most people will experience in their entire lives.
"He was fine and then one night I woke up in the middle of the night to feed him and his eyes rolled back into his head and he just started convulsing," said Nieko's mother, Jennifer Julian.
He was rushed to Trumbull Memorial Hospital and discharged shortly after, but when he got home he had another grand mal seizure and was still in convulsions when they arrived at the hospital a second time.
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Dr. William Bingaman, a neurosurgeon at the Cleveland Clinic Epilepsy Center, holds Nieko Julian.
"They transported him to Akron Children's, and that's where they identified a malformation on the right side of his brain," Julian said. "They started treating him with medication but he continued to seize.
"At one point, he was maxed out on four analeptic medicines and he was still having more than 100 seizures a day," Julian said. "Every time he had a seizure, it took so much out of his body, he was so limp, he just wasn't Nieko. There was no Nieko left in him. He wasn't reaching his developmental milestones because the seizures were killing off his brain. There was nothing else that could be done medically."
That's when they were introduced to Dr. William Bingaman, a neurosurgeon at the Cleveland Clinic Epilepsy Center, and a procedure called hemispherectomy.
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Jennifer Julian encourages anyone whose child is suffering from epilepsy to contact her for information or support. Her email address is: jenjulian42@gmail.com. To learn more about Nieko Julian's journey with epilepsy, visit his Caring Bridge page at www.caringbridge.org/ visit/niekojulian/mystory.
Inside the O.R.
By JENNIFER SHIMA
Tribune Chronicle correspondent
Brain surgery is not what you think. There's no drama, no gory scenes, and no tense surgeons barking orders over constant beeping.
I had the once-in-a-lifetime opportunity to watch a surgical team at the Cleveland Clinic remove half of a human brain, and I was blown away by the artful simplicity of it all.
Imagine a "Grey's Anatomy" operating room, with two neurosurgery residents leaning over a dinner-plate-sized hole in yards of blue draping, calmly carving out small sections of brain and dropping them into specimen containers. Imagine them doing this gracefully for four hours with utter confidence and tireless concentration.
Then imagine me, a few feet behind them, ready to pass out at hour three just because I'm a wimp and not used to standing in one place for that long. Or don't, actually.
Everyone in the room knows that the brain they're removing belongs to an 8-year-old boy who's suffered between 10 and 40 seizures each day of his short life. They know, but they're coolly detached, focused on the task at hand, not on the life they're saving.
"While we're doing it, we're really just focused on the procedure," said the attending neurosurgeon Dr. William Bingaman. "We do it to stop the seizures, to improve the quality of life for the patient and his family, but while we're doing it, it's technical."
They move with remarkable confidence, able to distinguish one wrinkled pink section from another even though it all looks the same to me. It's obvious that this is not Dr. Bingaman's first rodeo. He does more than 20 of these procedures a year, and he once removed half of the brain of a 30-day-old infant who weighed less than 11 pounds.
I can't help but think as I'm watching, that if more people knew how deliberate, how controlled and clean this whole thing was, more might consider having it done.
This isn't just a treatment for uncontrolled seizures; for many people, it's a cure.
This boy will probably leave the hospital in 10 days, go to rehab for a few months, and the right side of his brain will take over for what the left side would have done if it was healthy. Not only will he likely never have another seizure, he will walk and talk and lead a full life just like anyone else.
Of course, with any procedure there are risks, but reading the fine print makes us think of a giant bloody mess with the patient on the brink of death, their very life dependent on whether or not the surgeon was able to get a cup of coffee that morning.
But it's just not true.
I saw surgeons working on a live human brain just feet away, a brain that will have thoughts and a life of its own as soon as the anesthesia wears off, and I didn't feel uneasy about it for a second. I'm more nervous about the outcome of my dry-cleaning than I am about the results of this surgery. After seeing for myself how skilled and poised the surgical team was, I have no doubt that this child will be just fine.
Brain surgery isn't brain surgery - not for Dr. Bingaman and his team. For them it's an art form and a calling, and they're really, really good at it.
"While you're doing it, it's technical," said Bingaman. "But when it works and they come back seizure free, it's the best feeling in the world."
Editor's note: After reporting on Nieko Julian and the life-saving surgery that removed half of his brain and cured his epilepsy, Tribune Chronicle correspondent Jennifer Shima was given the opportunity to observe the same surgery on a different patient and to write about her experience.
"It literally means removal of the hemisphere," Bingaman said. "We removed most of the right side of his brain. Most children who have a hemispherectomies have something significantly wrong with one of the sides of their brain."
"You know how most brains are groovy and bumpy?" Julian said. "His wasn't. It was real thick, and on the right side, it wasn't groovy or bumpy, so they knew something was wrong on the right side."
Surgery revealed that he had hemimegaencephaly, a condition in which half of the brain is enlarged. The enlargement causes affected parts of the brain to be electrically abnormal. When these electrical abnormalities spike, they recruit healthy parts of the brain to misfire with it, causing patients to lose control of their bodies.
"The rate of mortality for people who suffer from epilepsy is about four times that of the national population," Bingaman said. "They have accidental deaths because they want to do things that normal people want to do like drive, use power tools, take baths. Think about what would happen if you had a seizure and suddenly lost control of your body as you go through your day to day life."
"Without the surgery, his quality of life would have been nothing," Julian said. "He would have kept seizing, and it would have done damage to the right side of his brain. We really didn't have a choice. You either want your child for the rest of your life and you take any disability that comes with it, or you watch your child suffer and die. His seizures were so constant, so strong, and so often, that there's a good chance that they would've killed him.
"After the surgery, as soon as we lightened his loads on pain meds, our Nieko started to come back," said Julian.
Now, at three-and-a-half years old, Nieko is doing extremely well.
"He's had not one seizure and he's on no medicine," said Julian. "He's very happy, loving, playful."
"He's a jokester," said Stephanie Moore, the early intervention specialist at Fairhaven who worked with Nieko until he turned three. "In Nieko's case, we know that in having half of the brain removed, the remaining half of the brain has to compensate for the half that was lost."
"Brain plasticity, or the ability of the brain to relearn happens from an early age until about 12 or 14 years old," said Bingaman. "Most of the children who've had hemispherectomies walk, and most of them use both sides of their body. They run, they are able to participate in life, and when you stop their seizures, they begin to catch up developmentally."
"When we first got Nieko, he was bouncing across the floor on his knees," Moore said. "By the time he left us at three years old, he was walking. His ability to communicate greatly appreciated over time as did his play skills."
"It's rewarding to see how far he's come, and he'll continue to make gains," said Lisa Casassa, early intervention director at Fairhaven.
"The problem is that people don't know that there is a surgical solution to epilepsy. So many people who should get the surgery, don't," said Bingaman. "If you stop the epilepsy, you improve a patient's quality of life tremendously."
"We want to raise awareness and be support for people who are going through the same thing, their hardest moments," Julian said. "Just telling someone could save someone's life. Nieko is a perfect ending."