Fighting Epilepsy in Memory of Micayla

Susan is sharing her family's journey with epilepsy in memory of her daughter Micayla

By Susan Branin

Lost a Loved One to Epilepsy

Thursday, March 16, 2023

In 2005, my daughter Micayla was 4 years old. While talking to her, she went limp and appeared to have a seizure. I had never witnessed a seizure before and knew nothing about epilepsy. I had no idea what was happening, but I thought she was being her usual silly self. Once she stopped, I didn't think anything else about it until just a couple of days later, while we were playing, Micayla again went limp and appeared to have a seizure. At this point, I knew she wasn't being silly. 
Her pediatrician could not tell me what was happening, but he determined that she was anemic, so he put her on iron supplements. After she seized in the bath, I had to pull her out of the water. I had enough of hearing doctors say she was fine when she had seizures every 30 minutes. 

I needed answers, so my mother and I drove her to a children's medical center in Dallas. They started running several tests, and three hours later, Micayla was diagnosed with epilepsy. As many others have experienced, the medications were trial and error to get her on the right one to slow down her seizures. 
As a teenager, Micayla's seizures became more frequent and painful, disrupting her days. We soon learned about Kamp Kaleidoscope, which is a camp for kids with epilepsy. Since other summer camps would not allow her to go due to seizures and not having the staff to accommodate her, we were excited about Kamp Kaleidoscope. 

During Micayla's first year there, she made several forever friends and met her first boyfriend. His family put us in contact with an epilepsy team in Houston, which was a blessing. The team took over Micayla's medical care, and after 11 years of tests and medications, they determined exactly where the seizures were coming from. Adjustments to her medications worked for a while, but her beautiful brain decided that wasn't enough. The neurology team put a plan in action, and after two brain surgeries, her seizures seemed to have stopped. We were relieved, and Micayla said with tears in her eyes, "Mama, it is finally over. No more seizures." 

Micayla was seizure-free for two years, and then they started again. She never let it get her down. Her spirit never diminished, and she became stronger and more uplifting to others. She was the most optimistic person I have ever met. 

We met with the neurologist and surgeon again, and after more tests, it showed that her brain did not rewire itself the way we wanted, which caused the seizures to return. Micayla decided on another successful brain resection, except for a little deficit where she lost feeling on her right side. Despite this, she fought and worked hard to learn to walk and use her arm again. She was able to get her driver's license and bought a car. 

The seizures started again two years after the second brain resection. At that point, no more brain resections could be done because of the location, so the next option was to have a VNS implant. Micayla decided that was what she wanted, so we did that. The implant was successfully done on December 2, 2022, and was scheduled to be turned on the following week. 

Micayla had a seizure that night and came out of it just fine. She called me and told me that she loved me. At 6:30 the following day, I received a call from my daughter, Savannah, and Micayla's fiancé. They said that she had another seizure, and they called 911 because she had stopped breathing. I rushed to their apartment and watched paramedics work tirelessly on Micayla. Once they got her transported to the hospital, she took her last breath. 

I will always love Micayla. Epilepsy and sudden unexpected death in epilepsy (SUDEP) took the best of my baby girl. It took the best of me. I want to be a support for other parents. I refuse to allow epilepsy to win, and in her name, I will continue the fight for those going through this battle.

Reviewed By: Sara Wyen

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