One in 26.
That’s the number of people who will be diagnosed with epilepsy during their lifetime, according to the CDC.
Almost 3 years ago, 12-year-old Jake Gmerek, of Massillon, Ohio, unexpectedly became one of the “ones.” Wanting to be defined by a different number, Jake underwent a procedure that was the first of its kind at Akron Children’s Hospital: epilepsy surgery.
While it was an arduous 2-year journey for Jake and his family, he never complained. Instead, he viewed the experience as an opportunity to make history… and to pave the way for other children just like him.
On Oct. 19, 2010, Jake was sitting in class when he started to feel “funny.” Concerned that he was going to pass out, he stood up to tell his teacher before collapsing and having a seizure. When the school called Jake’s mother, Kim Gmerek, she was in disbelief.
“I thought they called the wrong house,” said Kim. “Nobody expects that call. We were in shock – our perfectly healthy child just had a seizure. It was unimaginable.”
Jake was transported to Akron Children’s Hospital, where he underwent an MRI and several other tests. After he was discharged, Jake experienced several more seizures, as well as auras, abnormal sensations such as seeing colored lights or experiencing a tingling sensation that occur before a seizure.
“My husband, Mike, and I kept thinking that it could be a fluke, or there could be something more serious happening,” said Kim. “We were going from one extreme to another.”
The Gmereks took Jake to the specialists at Akron Children's NeuroDevelopmental Science Center. An abnormal MRI scan showed that Jake had experienced an injury to the left side of his brain early in life. Doctors believed he had suffered a stroke during Kim’s third trimester. With this discovery, coupled with his recent seizure activity, Jake was diagnosed with epilepsy.
“Epilepsy is one of the most common types of pediatric neurodevelopmental diseases,” said Deborah Holder, MD, director of epilepsy and clinical neurophysiology at Akron Children’s Hospital. “It occurs when there are abnormal electrical discharges in the brain. In Jake’s case, the injured part of his brain triggered the seizures. Since the injury happened so early in his life, that part of the brain became abnormal.”
At first, Jake received medications to help control seizure symptoms. However, the Gmereks were told that if he didn’t respond well, he would be a perfect candidate for brain surgery.
“As parents, what do you do?” Kim said. “You conceal your feelings and stay strong for your child, who’s crushed when he hears ‘brain surgery.’”
After a period of time, it became clear that Jake’s condition wasn’t improving.
“Out of those who are diagnosed with epilepsy, 30 percent still have seizures despite the medication,” said Dr. Holder. “That was the group Jake was in.”
For the next year, Mike and Kim researched epilepsy surgery, weighing the potential outcomes against the possible risks.
It would be the first one performed at Akron Children’s Hospital, accounted for by the additions of Dr. Holder and Roger Hudgins, MD, director of neurosurgery and the NeuroDevelopmental Science Center. And it would involve not one surgery, but two.
During the first surgery called brain mapping, surgeons would insert electrodes onto different areas of Jake’s brain. After the surgery, Dr. Holder and her team would stimulate the electrodes to map out the way in which his brain functioned.
The results would serve as a guide for Dr. Hudgins during epilepsy surgery to ensure that he removed only the abnormal sections of the brain to reduce the risk of difficulties after the procedure.
“The problem with the area in which the abnormalities existed in Jake’s brain was that they were very close to his language and motor areas,” said Dr. Holder. “We needed to make sure that we only removed the abnormal brain matter and left the normal portions in place.”
Kim and Mike talked through the possibility of surgery with Jake. At 13 years old, they felt he should have a say in the decision. After hearing all of the information, Jake looked at his parents, smiled and replied, “I want to do it. I want to make history.”
“I remember Mike and I looked at each other and thought – ok, let’s do it,” said Kim.
Dr. Hudgins met with Jake and his parents a few weeks before the surgeries to explain the process.
“I really like Dr. Hudgins,” said Jake. “He told me everything that I needed to know about the surgery – about how well it would work, how the scar was going to look, stuff like that. All of my doctors and nurses made me feel really comfortable. They became really special to me.”
On Aug. 6, 2012, Jake began his 14-day stay at the hospital. During this time, Jake had 92 wires extending from his head as Dr. Holder and her team mapped Jake’s brain activities, even stimulating a seizure to ensure they pinpointed the exact area of the brain that triggered them. He then underwent epilepsy surgery to remove the abnormal area of the brain.
Throughout the procedure, Dr. Holder and Patrick Brown, MD, child neurologist and epileptologist, came out at intervals to give Kim and Mike updates on the progress.
“Even though they told us he came out ok, we’re still thinking, ‘Will he be able to talk? Will he recognize me?’” said Mike. “We needed to go see him, look in his eyes and hear him say something.”
When Mike and Kim reached the pediatric ICU, they found Jake lying in his bed, following commands and drinking water. Kim recalled the feeling of relief when Jake saw her, smiled and said, “Hi, Mom.”
“This kid had just had a piece of his brain cut out, and he looked great,” said Kim. “His coloring was normal, his incision looked wonderful, he could talk. It was amazing. His time in recovery for a tonsillectomy was worse than this.”
A week later, Jake went home.
Today, Jake is on a positive road to recovery. While he continues to experience auras occasionally, he remains seizure-free. Though his stamina is weaker than before his procedures, his health is continuing to improve. And Akron Children’s staff members continue to help him every step of the way.
In addition to routine follow-ups with Drs. Holder and Hudgins, Jake also received help when it came time to make his transition into the classroom. To ensure the process went as seamless as possible, Jake worked with Lisa Standford, PhD, ABPP/CN, director of the division of neurobehavioral health. Jake’s grades continue to improve, and he'll run track this spring.
“While epilepsy is very common in children, surgery is really the only way to cure it,” said Dr. Holder. “Medications just treat the symptoms. By being able to provide this type of surgery at Akron Children’s, we can actually offer children like Jake a way out. It’s a real life-changer.”
Kim and Mike couldn’t agree more.
“If I was to look back two and a half years from now, and someone would say that I had to use Akron Children’s Hospital like our family did, I wouldn’t have believed them,” said Kim. “When it comes to your child, you want the best, and we have the best right in our own backyard.”
As for Jake, he thanks the doctors, nurses and staff members for changing his life.
“I always tell my mom that if I did this anywhere else at any other hospital, it wouldn’t have been the same,” said Jake. “I didn’t want to live the rest of my life with seizures. Akron Children’s didn’t just improve my life, they saved it. They gave me hope.”
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