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My son needed brain surgery to stop his seizures. Even though I'm his mom, I had a hard time making decisions.

Kelly Burch   

My son needed brain surgery to stop his seizures. Even though I'm his mom, I had a hard time making decisions.
  • Samantha Harney's son Trevor, 14, has epilepsy.
  • He was having seizures at least every other day, and wasn't responding to medications.

This as-told-to essay is based on a conversation with Samantha Harney. It has been edited for length and clarity.

My son Trevor didn't have an easy start to life. He was born at 37 weeks because of my high blood pressure, something I've struggled with since I was a teenager. After birth, Trevor developed pulmonary hypertension, a type of high blood pressure that impacts the heart and lungs. He was med-flighted to Children's Memorial Hermann Hospital in Houston and put on a life support machine.

The machine kept Trevor alive, but after five days, he had a stroke which is a complication of being on life support. That stroke led to hydrocephalus, or fluid on the brain, which caused Trevor to develop epilepsy.

When he was little, he didn't have many seizures. But about the time he transitioned from t-ball to coach-pitched baseball (around fourth grade for all you non-baseball parents), he started to get very sick. Soon, Trevor was having seizures about three days a week. At least one of those days was a cluster day — when Trevor would have seizure after seizure.

Trevor's seizures left him exhausted

When Trevor would have a seizure, he would rock, flap his hands, and repeat the word "OK." They were exhausting, and Trevor would immediately fall asleep after them. He started calling the seizures eye shakes because before they would come on, his eyes would move uncontrollably from side to side. Since not all seizures are visible, I knew there could be even more seizures that we weren't seeing.

Watching Trevor go through that was horrible. My husband works out of town, so Trevor does a lot of work on our farm, where we have two cows and about 33 pigs. Trevor has always wanted to become a farmer, following in his father and grandfather's footsteps. As his seizures got worse, I didn't even know if he'd be able to get a license.

The pandemic delayed Trevor's surgery evaluations

Doctors at Memorial Hermann put Trevor on three different medications, but none of them worked to stop his seizures. When he was nearing the maximum dosages, doctors explained that we might need to consider other options. A brain surgery to shave away a damaged portion of Trevor's brain looked like the treatment that was most likely to work.

That was in 2020. Trevor needed tons of testing before he could even be considered for brain surgery. We started the tests, but they were interrupted by the pandemic, and we had to redo most of them. Trevor was so frustrated, and I couldn't blame him.

I wasn't sure I was the right person to make this decision

All the while, my husband Taylor and I were going back and forth on whether surgery was the right option and whether we were the right people to make that decision. Of course, we wanted to do anything to stop the seizures, but I had a hard time making a decision about Trevor's body and his brain.

We weighed the pros and cons. A possible complication of the surgery was vision loss. We discussed what Trevor's quality of life would be like if he was seizure-free but had no vision. He loves showing cows and pigs in competitions, and I wasn't sure he would be able to do that or farm without sight.

Ultimately, I had to give it up to God. I wanted to chicken out and cancel the surgery. But when I talked with Dr. Manish Shah, a pediatric neurosurgeon who would be doing the surgery, he was so calm. His confidence let me know I was making the right decisions, and the surgery ended up being a godsend.

Trevor has gone 206 days without a seizure

Trevor had the surgery last November. Dr. Shah explained it to me this way: If a wire is short-circuiting, you need to cut it to prevent further damage.

That's essentially what he did in Trevor's brain. Doctors drilled a small hole in the back left side of Trevor's skull, where he had been experiencing seizures. They disconnected the dead area of the brain, which immediately stopped the seizures. Before the surgery, the longest Trevor had gone without a seizure was 13 days. Now, he's gone 206 days without a seizure.

Being seizure-free has given Trevor his life back. He's always been passionate about breeding and showing pigs. Now, he's learning to show cows. Before the surgery, he struggled to use both hands at the same time, but now he does that regularly to practice for competitions — in that way, showing his animals has been like occupational therapy for him.

Trevor has already bought a truck with his own money and hopes to continue being seizure-free to get his license. No matter what, I know he's well on his way to achieving his dream.


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