The Seizure That Changed Our Lives

The Seizure That Changed Our Lives
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“It’s probably just a febrile seizure. It happens to one in 25 children, and 60% of those kids will never have another one. She’s going to be fine.”

Those were the words spoken to me by the emergency room doctor, a former colleague of mine, on the November night when Austen had her first seizure. She was 5 months old. The night before had been completely normal. She had her bath and her nightly feeding, and actually went to bed without too much hassle. I was hopeful that she might finally sleep through the night.

She didn’t. She was woken up by her older brother crying because he needed a diaper change, and at that moment something inside her brain was triggered.

“Meagan!” screamed my husband, as I fumbled through the dark looking for a diaper. Our living room light switch wasn’t working, and I’m too short to reach the cord on the ceiling fan.

I yelled back that she was OK; she had just been woken up by her brother’s crying. But then my husband yelled something. All I remember is that I knew from his voice that something was really wrong.

He met me in the dining room, Austen in his arms. Having worked as an emergency room receptionist I had seen seizures before and told him I thought she was seizing. I ran around the house like a madwoman, grabbing my wallet and car keys before yelling that we had to go to the hospital. It wasn’t until I had made it to the front door that I realized I could not put a seizing kid into a car seat.

We’re lucky we come from a small town. It took less than three minutes for an ambulance to arrive and the emergency responder who walked through my door was an old friend of mine from high school. Austen had stopped seizing by then, and I all but threw her at him begging him to save her. She was postictal, limp, and clammy. I couldn’t tell if she was breathing.

I hopped into the ambulance with her while my husband dropped my other children off with a neighbor. The only thing I remember about the ambulance ride was the sound of the drill that they used to put in her IO, and that I repeated Our Father over and over. When the paramedic told me the name of the doctor on duty I breathed a sigh of relief. I knew him; he was a good doctor. He would take care of my baby.

Austen was awake within minutes of our arrival, and after a round of bloodwork, the doctor was satisfied enough to send us home.

“Don’t worry,” he said as he hugged me goodbye, “she’s going to be fine.”

In retrospect, he was partially right and partially wrong. Austen did have a febrile seizure, but she wasn’t fine. Within 48 hours she would be coded and intubated in the pediatric intensive care unit, and it would be six months before we’d know the monster behind her seizures.

There have been a lot of seizures, more than I can count, since that November night. But this one will always be burned into my brain. The first seizure, the seizure that set us on this course. The seizure that changed our lives forever.

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Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Dravet syndrome.

Meagan joined BioNews in 2020 as a columnist for Dravet Syndrome News. Before joining the BioNews team Meagan was a freelance writer for six years, and she also runs her own blog www.athomewithmeagan.com, where she talks about homemaking and parenting. Meagan lives in Colorado with her husband and three children. Her youngest daughter, Austen, was diagnosed with Dravet Syndrome in May of 2016 at one-year-old.

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Meagan joined BioNews in 2020 as a columnist for Dravet Syndrome News. Before joining the BioNews team Meagan was a freelance writer for six years, and she also runs her own blog www.athomewithmeagan.com, where she talks about homemaking and parenting. Meagan lives in Colorado with her husband and three children. Her youngest daughter, Austen, was diagnosed with Dravet Syndrome in May of 2016 at one-year-old.

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