chiari malformation

‘The neurosurgeon apologized profusely, looked me in the eye and said, ‘You were right.’ She was walking all night, screaming bloody murder.’: Mom of chronically ill child urges parents ‘if you feel something is wrong, it probably is’

“During the day, she was completely normal. But at night she would pull out her hair and headbutt her bedroom wall in her sleep, begging me to ‘make it stop.’ She was deteriorating. I had to fight for answers. I had to beg for care for my very complex child. My gut was telling me something was being missed.”

‘Calm down a little. Sleep it off.’ My baby had an egg-sized lump on his skull. I was told I was ‘just a stressed out momma.’: Baby diagnosed with Chiari Malformation after mom’s concerns brushed off for months, ‘I’m so glad I trusted my gut’

“Rowen’s skull was swelling. He started grabbing his head constantly and screaming. He was throwing up non-stop and couldn’t even turn his head. I kept hearing time and time again from doctors, ‘You just need some sleep.’ It got to the point where every time they saw me, they asked, ‘Are you getting sleep? You need it badly.’ I started to doubt myself. Was I going crazy? But deep down, I knew something wasn’t right. I decided to go with my gut. Enough was ENOUGH.”

‘If we waited 2 more weeks, you would’ve been paralyzed from the neck down.’ I was in and out of consciousness. Death wasn’t the only thing on my mind.’: 15-year-old undergoes brain surgery after feeling dizzy, discovers rare chronic brain condition, Type 1 Chiari Malformation

“I knew something was very wrong. I was barely able to hold myself up. ‘Really Jen? Pull it together.’ No one had answers. All I heard was, ‘I think you’re depressed.’ I felt like someone had filled my head with cement. At this point, I had given up. I convinced myself I was out of my mind. I laid in that MRI machine and lost track of time. I felt like my life was over at 15. The tech pulled up the images on the computer. ‘You’re going to need a neurosurgeon.’”

‘I had to drop out of high school. My identity was being ripped from me.’: Young woman devastated after dropping out of school due to mental health problems, later graduates in adult education

“The one thing I was ‘known for’ was being taken from me. I vividly remember I’d have to hide in the bathroom before school started, practically unable to function, dragging myself to my classroom at the last minute. I felt entirely numb. I felt absolutely nothing. How could I not be graduating? It was my senior year!”

‘My appendix ruptured while pregnant. ‘She is perfectly healthy,’ the doctor reassured. He was so incredibly wrong.’: Mom births baby with craniosynostosis, ‘she is perfectly imperfect’

“The ultrasound photos showed a perfectly formed body, 10 beautiful fingers and toes. Once born, she cried out one time and then fell silent and blue. Her nasal passages were blocked by bone and my placenta was torn to shreds. Avery’s condition was so much more complicated than any of the photos led us to believe.”

‘My husband said, ‘My chest hurts. I feel like I’m having a heart attack.’ I started getting angry. He wasn’t demanding answers.’: Mom delivers triplets after finding husband has Chiari Malformation, ‘Each day I am more grateful’

“I called my husband: ‘You have to leave work.’ I couldn’t find the right words, so I just showed him the ultrasound pictures. Three perfectly healthy babies. I felt like I was in a dream. We both sat there for what seemed like the whole afternoon. How would we manage this with his new diagnosis and 2 active boys who were already taking up all of our love and energy?”

 Share  Tweet