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 fate may throw at you. But no amount of over-preparing prepared me and my family for navigating my daughter’s medical emergency during a global pandemic.

What took place early on the morning of July 18 has changed our lives forever. Kaylee woke up at her normal time early on Saturday, but what happened next was not normal. I noticed that she started making strange movements, almost like a startle reflex, that I had never seen her make before and she repeated them for about 15 minutes. At the same time, I noticed her eyes were also making quick, repetitive movements — so I Googled “infant spasms” because that is exactly what it looked like. The first result to come up was InfantileSpasms.org and it said to record a video to take to the doctor, so I did. When my husband woke up a little later, I showed him the video and asked him if he thought what he saw was concerning. He didn’t know if the movements looked odd or not until she started doing them again a few minutes later. When that happened, we decided that Kaylee needed to go to the emergency room.

Due to COVID-19 rules in place at the hospital, only one of us could go, so my husband took Kaylee, along with the video I had taken of her that morning, to Wolfson Children’s Hospital in Jacksonville — about 45 minutes away. Of course, contracting COVID-19 by taking Kaylee to an emergency room was a fear of ours, but we knew something was not right. Looking back now, if we had not taken her that day we are not sure what would have happened to Kaylee.

At the hospital, the staff looked at my husband like he was crazy when he brought Kaylee in because on the outside she looked like nothing was wrong with her. (Prior to the onset of Kaylee’s IS, she was meeting her developmental milestones and was exhibiting no concerning behavior that we or her pediatrician could see.) After showing the staff the video, they immediately became concerned about the unusual movements and admitted Kaylee right away. The neurologist was called in and he ordered an overnight electroencephalogram (EEG) test to be done to evaluate the electrical activity in Kaylee’s brain. They ended up keeping Kaylee through the weekend for additional tests. After an MRI on Monday, Kaylee was diagnosed with Pachygyria and Polymicrogyria (PMG), a condition characterized by abnormal development of the brain before birth — which they believe is what is causing the infantile spasms.

Infantile spasms (IS) are a rare, but serious type of seizure, occurring in 1 in 2,000 children, which can cause catastrophic, permanent damage to a child’s developing brain. Worldwide, it is estimated that a baby is diagnosed with IS every 12 minutes. IS are often associated with another diagnosis like PMG or Tuberous Sclerosis Complex (TSC), but they can also be cryptogenic, meaning having no identifiable cause.

For most parents and caregivers, seeing short, rapid spurts of the arms or body and wide-eye blinks may not seem that odd in infants. That is why it is important to know the signs of IS. The onset of IS peaks between four and eight months of age, although the seizures can begin anytime in the first two years. Kaylee was four and a half months at the time she was diagnosed with PMG and IS. Soon after the spasms begin, children may stop making developmental progress or even lose skills they had previously acquired, causing significant cognitive disabilities if left untreated.

As a parent, you have to be an advocate for your child and trust your instincts. If you believe your concerns are being overlooked or something is not sitting right with you, pursue a second opinion at a TSC clinic, a Comprehensive Pediatric Epilepsy Center, or a neurologist with expertise in treating IS.

We have gotten Kaylee’s spasms under control after several months of working with many doctors and specialists and attending in-person and virtual appointments. It is absolutely heartbreaking to watch your child go through something like this and it is easy as a parent to feel lost and hopeless in the face of such a devastating diagnosis. And that is why this Infantile Spasms Awareness Week, December 1-7, 2020, we are sharing our story as a reminder to not delay regularly scheduled appointments or seek emergency medical care. Any delay in treating your child’s illness or injury could cause serious complications, presenting a far greater risk than the chance of contracting the coronavirus in a doctor’s office or hospital.

About the Author

Ashley Callahan is a proud St. Augustine wife to James and mom of two girls, Madilyn (4) and Kaylee (9 months). She is on a mission to help educate moms and dads alike to spot the signs of infantile spasms and what they mean for families.