A hospital visit brings back memories of a helping community

I recently had a visit at a Children’s hospital for the first time since losing Austen, my 9-year-old who passed away last year from complications of Dravet syndrome.

While it was part of the same network as the hospital Austen visited, it was in a different city, for a different speciality, and a different child, so I didn’t expect that going there would hit me hard. I was wrong. Just seeing the signature blue roof from a distance, peeking out over the horizon, hit me like a ton of bricks.

The first time I stepped into a Children’s hospital with Austen was in November 2015. She was 5 months old, and I’d just left our local hospital where her pediatrician, who had also been my pediatrician as a child, coded her during a status seizure. He’d hugged me and prayed with me as the medics wheeled her toward the awaiting ambulance.

“We’re not actually sure she’s even stopped seizing, or if the medications are just keeping her body still,” was the first thing anyone from Children’s said to me. At that point we’d never heard the term “Dravet syndrome,” much less realized the reality of this monster that would go on to control so much of our lives. We hadn’t yet realized how much the Children’s network would come to mean to us.

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Reminders of Austen

It was a doctor in the network who, several months later, diagnosed Austen with Dravet syndrome, and another at a partner hospital in Colorado who took care of her for six years. It was neurologists at Children’s who tried every medication imaginable to stop her seizures and eventually got her on the Fintepla (fenfluramine) trial that gave us so many good years with her.

It was at Children’s where she went for her echocardiograms and lab work, and Children’s where she was admitted for every stay in intensive care or 24-hour EEG. It was almost a home away from home for us, as sad as that sounds.

Austen had her last neurology appointment only a month before she passed away. Her meds were increased, she was given a clean bill of health, and the words, “I think she has the potential to be completely seizure-free someday,” were spoken.

That statement was right, just not in the way we imagined.

Now I’m walking through the doors with a different child. Austen’s older brother, Atlas, has been diagnosed with eosinophilic esophagitis and sees a gastroenterologist regularly for the condition. I sit in waiting rooms without the fear of Atlas not walking out with me. But if I sit and listen hard, I can hear the echo of Austen’s laughter — in the halls of a hospital she never walked in. An organization that gave her so much life still reminds me of her in death.

I don’t think I’ll ever be able to thank in any tangible way the doctors and nurses who cared for her, but their impact on our lives will live on in our memories with Austen that they made possible. And I’ll cherish those forever.

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, and are intended to spark discussion about issues pertaining to Dravet syndrome.

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