skull

‘Mommy, I’m scared!’ Her eyes rolled to the back of her head. I was terrified to turn around.’: Little girl survives freak Go Kart accident, ‘she is a ‘walking miracle’

“The engine shut off. My world stopped. Time stopped. Lani is on the floor, not moving. My mother is holding her scalp to her head. ‘Baby girl! Please wake up!’ Hearing the words ‘your daughter may not make it’ is the most frightening statement you can hear as a parent. I’m sure of it.”

‘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.”

‘I was told, ‘We didn’t want your head to pop off.’ There was a serious problem.’: Woman diagnosed with Ehlers-Danlos Syndrome after 10 years of being doubted by doctors because ‘it can be very difficult be taken seriously as a teenage girl’

“I felt my skull slide into my throat. I immediately started gagging and pushed my chair on its hind legs. It can be very difficult to be a teenage girl and be taken seriously. This wasn’t the first or last time I’d be doubted about my symptoms. Being doubted really plays with your head. I was never a dramatic attention seeking individual.”

‘Her eyes were huge, her skull was misshapen. Even though we had prepared ourselves as best as we could, it was still a shock to see Emmy in the flesh.’: Mom gives birth to baby with Pfeiffer Syndrome

“My honest thought when I first saw her was, ‘It wasn’t supposed to be this bad.’ Our doctor didn’t say anything. The nurses were silent. Emmy was silent. It was eerie and terrifying. We know she will always look different and will face bullies in her lifetime, but our goal is to always show her how loved she truly is.”

‘Why isn’t she letting me see my baby? I want my baby!’ Our nurse was stalling, looking for something. But what? I felt sick.’: Mom’s newborn diagnosed with Pfeiffer Syndrome, wouldn’t ‘change her uniqueness for the world’

“As far as we were concerned, we were going to give perfect to a perfect, healthy little girl. Instead, she was born with unusually low ears, a cone-shaped head, and a squeezed brain. NO ONE at our hospital had seen anything like it. I was in shock and kept thinking, ‘Why her? How am I supposed to take care of her?!’ I didn’t feel prepared or strong enough for this. I was grieving the loss of a child, the one I thought I was having.”

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