Juni’s Mom ➡️ Hailey

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TRIGGER WARNING: SECOND SLIDE SHOWS SEIZURES I’ve never shared in depth about our traumatic and infuriating path to a diagnosis of Infantile Spasms. But today, I will. Because, unfortunately, our story is not rare. SLIDE 1: The day before our lives changed forever. We had never heard of IS. We had no worries about epilepsy. We had a healthy six month old little girl— or so we thought. Slide 2: “She’s doing that thing again,” I said to Derek who was on the phone. In the video, you can hear in his voice when he starts to worry and decides he needs to end the phone call. This is the video we tried to show her ex pediatrician when we called and expressed our concern. She didn’t want to see the video and told us to bring her to the ER only if she shows signs of breathing difficulty. This is the video we showed to the room full of medical professionals when we ignored her ex pediatrician’s advice and arrived at the local ER just an hour later. Slide 3: We sat in the ER- the hospital Juniper was born in- for four hours. We had at least four doctors look at the video. Many witnessed her having what we now know were seizures. Every single person told us not to worry. One doctor admitted he didn’t know what it was and that we should see a neurologist “at some point”, but that it wasn’t an emergency and “wouldn’t be harmful” to her. At one point, Derek began Googling and found a video from UCLA that talked about IS. He showed this video to the ER team. Their reply: “Maybe. Set up an appointment with a neurologist at some point.” We were sent home. SLIDE 4: We debated on what to do for another 24 hours. And then, out of desperation, I posted the video in a Facebook group for Moms in Academia. Within moments, I was overwhelmed with responses saying what we had feared: “I think this is something called Infantile Spasms” “Go to a Children’a Hospital now.” “This is an emergency.” “Please take her in.” This is the photo we took when we were ushered back into a room at the children’s hospital an hour away from our home. I will be forever grateful to @ohsudoernbecher for taking us seriously and being knowledgeable about IS. <<continued in comments>>