How much do you know about epilepsy? Do you know how disruptive it can be to a person's life? To the life of a child's family?
Read about how one family came to the brink of the abyss but through strong faith, a little luck and great care from the Children's Miracle Network of Hospitals, managed to find their way back into light and life.
EPILEPSY — An Electric Battle In The Brain
STORY AND PHOTOGRAPHY by Rebecca Berra
Noah Korth was 2 years old when he had his first seizure. Noah’s dad, Jake, was at work and Shannon was at home, pregnant with their youngest child, Caleb. Brandon, 9, was playing in one room, while his younger siblings Tyson, Noah and Mya, ages 4, 2 and 1, were listening to music as Shannon cleaned the house. She went into the kitchen and when she came back, Noah was lying on the floor, motionless, his eyes rolled back.
“I thought Noah had fallen, but his body was stiff. I called 911. They arrived quickly, but it felt like forever! I was holding Noah and crying,” Shannon remembers.
Tests at the Children’s Hospital in Wisconsin showed that he suffered frequent sub-clinical seizures, which have no outward symptoms. Noah was diagnosed with epilepsy.
Over the next few months, Noah tried three different medications, suffering some serious side effects and continuing to have seizures. The following summer, a doctor noticed a faint heart murmur and advised further testing.
“There were several holes in his heart and they told us Noah has ASD—atrial septal defect—a separate condition,” Shannon says.
In 2009, Jake accepted a new job offer and the family moved to Colorado. Shannon had heard good things about Children’s Hospital Colorado, so she called to find a new neurologist and cardiologist for 4-year-old Noah. The new cardiologist said that Noah needed surgery right then.
“It went well," Shannon says, with a smile. "He is now considered heart healthy!”
HEART HEALTHY, BUT SEIZURES OUT OF CONTROL
In the weeks following Noah’s heart surgery, to Shannon’s dismay, he had multiple seizures.
“They just started coming full force. We ended up bringing him back to the hospital. He would say, ‘Mommy, I’m scared,’ then look to the side and seize for a couple of minutes. Later, he was having a seizure every minute. I guess he had a thousand through the night. They put him in a drug-induced coma and he had to be intubated,” Shannon recalls, indicating that Noah could no longer breathe on his own, so he was attached to a ventilator.
“Noah’s brain was supposed to reboot,” Shannon continues. “But he was still having seizures in the coma. At that point, a month after his heart surgery, we were told that he had to have emergency brain surgery.”
Noah’s skull was removed and more than 100 electrodes were placed directly on his brain. Still in a coma, his brain activity was monitored for a couple of days, with Shannon at his side. Noah’s seizures were coming from one specific area in his left frontal lobe, dangerously close to the area controlling his motor skills. Shannon and Jake were told Noah might never walk or talk again.
“They took out a part of Noah’s brain, the size of an apple. He had to relearn everything—talking, eating, going to the bathroom, walking. All the stuff he knew how to do was gone,” Shannon explains. “Noah had speech therapy, physical therapy and occupational therapy. He was very frustrated. He was just so weak. I remember he took his first step on my birthday. That was so cool!”
Noah’s successful recovery exceeded expectations. Now 10, he is five years seizure-free and works hard at school, helped by a special needs teacher, who he loves. He is passionate about baseball and recently hit three home runs in one game.
He also serves as the 2015 Colorado Champion for the Children’s Miracle Network, spreading awareness and raising funds for Children’s Hospitals across the nation.
“A lot of people don’t know about epilepsy, but anyone can get it, at any age. It’s not really talked about and not well funded,” Shannon believes.
Epilepsy is a medical disorder that causes recurring seizures. These are periods of abnormal electrical activity between brain cells, resulting in physical or behavioral changes, such as full-body shaking.
BACK TO SCHOOL
With Brandon starting at Metro State University in August, Tyson moving into seventh grade at Cimarron Middle School, and Noah, Mya and Caleb attending Frontier Valley Elementary, Jake and Shannon Korth have gotten used to facing new challenges with hope and courage.
“Moving, starting a new school, having a child with special needs, making sure your other children are doing well, it’s all very scary,” Shannon notes. “Everything always falls into place the way it’s supposed to. Because of Noah’s illness, we are stronger as a family.”
Noah has his own message for other sick kids: “Don’t worry. The doctors will take care of you. Everything will be all right.”
First published in Parker Lifestyle magazine, August 2015. Reposted with permission.
Rebecca Berra Photography
I love, LOVE, L♥VE photography! And my family, friends, life, traveling, music, skiing, good food, nature, our Parker community, the world... But I'll try and stick to the photography here! Most of the time....... ;-)