For Infantile Spasms Awareness Week 2025, Bernadette has shared her experience of Infantile Spasms through her son Seán – who was diagnosed almost 16 years ago…
It was nearly 16 years ago when Infantile Spasms came into our life. Back then, it was known as West Syndrome – and I’ll always remember those initial weeks when this condition first presented.
It began with what I thought was head butting. Seán would suddenly thrust his head towards me, landing on my shoulders. I put it down to frustration of teething, but I couldn’t shake that feeling deep down that something was wrong. I approached my GP at the time, feeling like a fool – with neither of us knowing at that point these were head drops associated with Infantile Spasms.
Then came the crying – but not normal crying. These cries ended with him falling fast asleep as if the world had drained him. As any mother will tell you, a growing baby needs his sleep – but it felt like and looked like he wasn’t getting any with how he slept after these cries. Again, I approached my GP for reassurance – but left with that continued feeling that something just was not right.
This all happened in a period of four weeks when Seán was just 5 months old. Things came to a head in the fourth week, when I noticed blood coming from his mouth. My heart shattered. I knew something was wrong, that it wasn’t a phase – but I didn’t know what it was.
During this period, there were changes I couldn’t ignore, and I just needed someone to listen. Seán lost his smile - that beautiful, effortless grin that lit up my world. He had also lost his fall reflex. I watched him topple without trying to catch himself. I felt powerless.
I am not a bold person, but I entered the GP waiting room and was not leaving without answers. Then it happened when I was with the practice nurse and they witnessed everything. Seán woke from a sleep and did everything I had been explaining – threw his head; moved awkwardly; let out deep cries and then fell into a deep sleep having just woken.
We were in the hospital 30 minutes later.
Seán had a substantial seizure minutes after we got to the hospital – the classic body crunches that we now know are Infantile Spasms. This being seen and witnessed by experts, the diagnosis of Infantile Spasms wasn’t long coming.
My husband and I were told not to google the diagnosis – but of course being told this meant it was almost the first thing we did. The words we seen will be etched in our mind forever – “the most catastrophic form of childhood epilepsy”.
But then came hope. Seán’s initial treatment worked for just three days before the seizures presented again. A new treatment was tried – and it worked, extremely successfully.
Slowly but surely, the child we knew returned to us and that grin was back. Three years later, and he was weaned off all medications.
Those three years were not easy – there was side effects from treatments; countless tests and a whirlwind of hospital visits – filled with hope and worry.
I’ll always remember how in one of these many visits, Seán had learned to say “Happy Miss Miss” for Happy Christmas during the festive period. We had a neurology appointment on February 1st, and he decided that he would wish his doctor a “Happy Miss Miss”. At that point, it had felt like we were turning a corner and on the upward trajectory – so to this day, we still celebrate Miss Miss Day on February 1st as a reminder of resilience, hope and Seán’s beautiful spirit.
After the experience of having Infantile Spasms, Seán developed very well – a little behind his peers but nothing of huge consequences. His speech was the biggest challenge – although he had his own adorable words; “Hanny” for “Granny” and “Aunty Titteh” for his Aunty Colette.
Seán is doing well but you can read it from him in his own words – as he has also shared his story for Infantile Spasms Awareness Week 2025 and it is featured on the Epilepsy Ireland website as well.
With it being almost 16 years since Seán’s diagnosis, we wanted to share his story this year. We know how incredibly lucky we have been with Seán’s outcome, and unfortunately, that not everyone will have this experience. However, we wanted to share with any parents who might be at the beginning of their journey with Infantile Spasms that positive outcomes are possible.
I would also encourage every new and expectant parent to trust their gut; a parent’s intuition can be extremely powerful. Please learn about Infantile Spasms this week – I wish I had the information that is available now 16 years ago; its so important to be aware of and swift action is so, so important.
Thank you for reading.
Thank you, Bernadette, for sharing your and Seán’s story. Please follow her advice and visit the Infantile Spasms page of our website to learn more. You can also read Seán's Story of infantile spasms by visiting this link on our website.