For any parent, leaving the hospital with the newest edition to your family is nerve-wracking. Figuring out how to manage life with a new baby can feel overwhelming and terrifying, and you try to calm your nerves by planning for just about anything that life may throw at you. But no amount of over-preparing readied me and my family for navigating my baby daughter’s medical emergency during a global pandemic.

The events that took place on July 18 this year have changed our lives forever. My daughter Kaylee was just four and a half months old and woke up at her usual time early on that Saturday morning. But almost immediately I noticed that something was off-kilter. She began to make strange movements—almost like a startle reflex—that I had never seen before and continued them for about 15 minutes. At the same time, I noticed her eyes were also making quick, repetitive movements.

At first, I was just confused. I had no prior knowledge of infantile spasms or seizures in infants, so I didn’t understand what I was seeing. Kaylee’s spasms that morning were so subtle you could blink and miss them. But as they kept happening, I started getting a funny feeling that something wasn’t right. Desperate to discover what was wrong, I looked up “infant spasms” online, the only description that seemed to match what was happening to Kaylee.

The first result to come up for me suggested recording a video of Kaylee’s movements to take to a doctor, which I did. When my husband woke up a little later, I showed him the video. Initially, he couldn’t tell if the movements looked odd or not, until he saw Kaylee start to spasm again a few minutes later.