As part of our efforts to raise awareness of infantile spasms, Katie has shared her story of her experience with the condition through her son Jonah…
Our journey with infantile spasms began more than two years ago on Christmas Day 2023, when my son Jonah was four months old. He woke from a nap when he suddenly began staring off to the right. The colour drained from his face and his little body stiffened.
We rushed to our nearest A&E, an hour away. During the drive Jonah had another episode, and deep down I knew something was seriously wrong. However, when we arrived all of Jonah’s observations were normal and he appeared well. Tests showed he was positive for flu A, and we were told this was likely the cause of the “episodes.” He was admitted to the hospital for monitoring, and although no one could say exactly what was happening, the hope was that it was all due to the flu and we’d be home in a few days.
Once Jonah was admitted to the hospital, the episodes soon changed. They became head drops, his body would stiffen, and his arms would fling outwards repeatedly – things I now recognise as classic signs of infantile spasms.
An MRI was performed and it showed no structural abnormalities, so we tried to stay hopeful. The words “infantile spasms” were mentioned, but nothing could be confirmed until Jonah underwent further tests. As it was Christmas, an EEG couldn’t be arranged until we were transferred to a children’s hospital three days later. In the meantime, I turned to Google, desperately searching for reassurance and praying my tiny, precious baby would be okay.
When we were transferred to the children’s hospital three days later, an EEG was finally performed. I watched as it confirmed my worst fears: Jonah had infantile spasms. In that moment, our world shattered.
Once Jonah’s diagnosis was confirmed treatment began immediately and after a week, another treatment was added; and we finally began to see a reduction in the intensity of the spasms. The treatment was tough - Jonah stopped smiling and the steroid rage was unbearable - but we pushed through. After 17 long days in hospital, we were finally allowed home.
The days and months that followed were full of uncertainty - constant “what ifs,” overwhelming fear, and a deep sense of blaming myself for something completely out of my control. It was incredibly hard to come to terms with our new reality. I cried day and night, constantly comparing Jonah to other babies and longing for him to reach his milestones.
Jonah’s diagnosis was, and still is, heartbreaking. There have been so many unknowns, endless trial and error to find the right medication, and hundreds of appointments and therapies. But now, almost two years on from his first seizure, Jonah is doing incredibly well. He’s walking, saying a few simple words, and being the wonderfully mischievous two-year-old we dreamed of. We are now 19 months seizure-free - something I could only have wished for in those early days.
We still have a long journey ahead, but I am endlessly grateful for the medical care Jonah has received. And to any parents or families facing infantile spasms right now: there is light at the end of the tunnel. It might look different than you once imagined, but it’s there. Your baby will bring you joy you never knew possible, and you will celebrate every milestone with an even bigger heart.
There is so much support out there - please reach out. It can feel incredibly lonely, but you don’t have to face this journey alone.
Thank you, Katie, for taking the time to share your story. Please follow her advice and visit the Infantile Spasms page of our website to learn more.