chiari malformation

‘Calm down a little. Sleep it off.’ My baby had an egg-sized lump on his skill. 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.”

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