Stories

A few hours after the birth of our beautiful daughter we knew that something just wasn’t “quite” right, but we couldn’t put our fingers on it, and the doctors were no help at all. “It will round out”, they said. The shape of her head was just “off” in that she had a rather large […]
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Hannah’s birth almost happened in the car. A mere 9 minutes after arriving at the hospital she was in my arms! She was a firecracker from day one! We all noticed right away that she had a strangely shaped head, but her birth was rather fast, so we all presumed it would round out over […]
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Madison was born Jan. 2009 with craniosynostosis. Her Dr. (who had practiced almost 40 years) had no idea what was wrong with her. I teach college Anatomy and I knew of plagiocephaly, but not cranio. So, I knew something was wrong. She did not have a right occipital bone and her skull was deformed. The […]
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I had known for a couple of months that my baby would be very small, and he was! (born weighing just 4lbs on 8 Feb 2013). Despite being tiny, though, I thought he seemed perfect. It was only when he was four weeks old that a health visitor said she was worried about his head […]
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Hi, I’m Patrick! I was diagnosed with craniosynostosis at my 4 month check up. I had endoscopic surgery in NYC on May 1st 2009. Then I wore my helmet “Mr. Helmie” for a year after. Now, I’m 5 and live Kansas City with my mom, dad and 3 big sisters. My mommy, Jill is currently […]
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Right after my son Emmett’s 1st birthday, he had his first tonic clonic seizure (aka grand mal). This is the type of seizure typically portrayed in movies: a loss of consciousness, falling to the floor, foaming at the mouth, and big, violent convulsions. Obviously, it was very terrifying to watch in our 1 year old […]
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