Infantile Spasms



When we found out I was pregnant with a little girl we were over the moon!! After 16 years my son would have a little sister and our entire world would be painted pink. During our 20 week ultra sound everything seemed great until we walked out to wait for the doctor. I could hear the tech telling him “everything looked great except….” Our sweet girl had a slight curve in her spine. We started seeing the perinatal doctor the very next day and also visited with the orthopedic.

Until Lainey arrived everything else looked great. Her back turned out much better and we were elated and were in heaven with this sweet baby. The day after she was born she was taken back to NICU for breathing issues and then we were told about the issue with her left eye. Initially I thought she was so swollen and her eye was just puffy. We quickly found out that her left eye never fully developed and they couldn’t guarantee vision in either eye.

In such a short time our daughters birth experience had been tainted with tons of tests and uncertainty. We survived those 9 days in NICU and finally brought our baby home. We all were finally getting adjusted to our new life and we thought for sure we were over the hurdles. At just 3 1/2 months old we noticed Lainey jerking her little body. We were first told it was a common occurrence in premies called infant tremors and there was no need to worry. They continued to get worse and my motherly instinct told me it was serious. I called my dr and was sent to Scottish Rite. She seized over and over again in the ER and we were admitted.

They ran so many tests and my sweet girl was so sedated the entire time we were there. When they told us about the infantile spasms I had no idea what to expect. Little did I know how our world would be turned upside down.

Overnight my sweet baby lost all ability to function as she did before. She lost all head control, hand control, and just slept. When she did wake up she would seize. Her seizures became so traumatic for everyone. She held her breath and her lips would turn blue. I never traveled without someone in the backseat with her because I feared she would stop breathing and I wouldn’t reach her in time.

She became so swollen from all the steroids. All in all I felt like we were living a nightmare. We were able to come off the steroids but her topamax increased instead. The topamax maintains her seizures to just 2-3 a day but it takes away her personality and risks even more damage to her eyes.

That’s why fighting for the HB 885 is so important. My Lainey is not at a critical point and I hope she never is but there are no guarantees with seizures!! Please continue to fight for all our babies! They all deserve a chance to live a better life!

You can follow her story through Facebook at Loving Lainey “bug”

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