Zayn’s Story

Zayn is our darling, 1-year-old boy. His eyes are always seeking and his laughter is rambunctious. He has no idea of the challenges he has overcome.

A few days after Zayn was born, I noticed some odd behaviors. My newborn looked far away, he took quick breaths and had little bubbles at his lips. By the time the nurses came around to my call, they told me he was just sleepy – and that I, as a new mom, was fatigued as well. On the day of discharge, I was recounting the behaviors to the pediatrician when it happened again, this time in front of him. “I have to tell you, this looks like a seizure.” Off to the NICU my baby boy went. He stayed for several weeks in our community hospital, resistant to various first-line medications. We transferred to UCLA, where genetic testing revealed he had KCNQ2 and we were able to get him stable on medications. He came home after a total of six weeks hospitalization. As difficult as our hospital stay was, I will never forget the constant love shown to us by our NICU nurses and doctors. They are the most compassionate individuals who took the time to hug me and cry with me on my darkest days.

Although he has been nearly a year seizure free, our journey has not been without its difficulty. We work hard every day to improve our fine and gross motor skills. Zayn has yet to feed himself, crawl, or walk. But what he lacks in movement, he exceeds in emotion. He loves to smile, laugh, and shows wonder to the sounds of the world around him.

KCNQ2 is a spectrum of severity. One aspect that makes this challenging is that at first glance, Zayn doesn’t look much different from other, neurotypical, babies right now. As parents, this can feel incredibly isolating. It’s hard to meet other parents and be questioned as to why our baby wasn’t crawling or walking like theirs. As a first time mother, it was painful to give up what was my ideal babyhood. But all difficult lessons are exercises in strength for the heart. As much as Zayn has grown, so has our own capacities for love and strength. We adore him so very much!