This is my daughter Ella who is now 2 1/2 years old. When she was 4 mo old, we noticed a “knot” towards the back of her head. Of course I immediately took her to the pediatrician, at that time was told it was nothing to worry about her skull is still growing, will check… read more
Our daughter Dyllan was born with no signs of Craniosynostosis. It wasn’t until she was 6 months old that I felt her soft spot was bulging. After several ultrasounds and no answers I demanded that a CT scan be done to get to the bottom of what was happening. Finally, a week before her first… read more
In November 2012 we found out that we were expecting. We were excited and nervous like all first time parents. I am a teacher and I loved sharing my pregnancy with my class of pre-k students and their families. I had a normal pregnancy and on June 29th (a week after I started summer break)… read more
Read the full story and blog here: http://nikhilscraniojourney.weebly.com/story/category/all Our Cranio journey started on October 1st 2012 during a followup appointment for Nikhil at the Plagiocephaly Clinic at BC Children’s Hospital, Vancouver. Nikhil had a flat head since he was about 3 months old and his Pediatrician had referred us to this clinic to get… read more
As our son turns one, we finally thought we’d share our story in hopes it brings more Awareness of craniosynostosis and helps other parents going through this now, just remember that it will pass and that “ you are stronger than you think”. We found out we were expecting our first son Emilio Luis Garcia… read more
Jana Marie Raak was born on June 26, 2013 at 10:47pm. She was 10 days early, born naturally and without complications. 7lbs, 10oz and 20in long. My husband and I were beyond ecstatic, our first born! Throughout our joyous first month we noticed that her left eye was open more than her right eye. She also… read more
First I would like to say thank you to all of the families that shared their stories. They helped me when I was scared and worried. You all are strong individuals and have strong babies. Here’s our story… Briggs was born on April 17, 2014, a healthy 8lbs 6oz. He was born an emergency C-section.… read more
At Cole’s 2 month check-up the pediatrician had a difficult time locating his soft spot. She asked another doctor to come for a second opinion. His first question was “Does his forehead resemble anyone in the family?” We did not have an answer. He felt his head and said if the soft spot was open, it… read more
The first time we heard that big scary word, craniosynostosis, it was in Spanish. We were living in South America when our third child Simeon was born via emergency c-section. While we were still in the hospital after his birth, my husband noticed an odd shape to his head, but I was too groggy and… read more
So it is Thursday July 10th and I am sitting in the ICU with my amazing 3 1/2 month old son Cole. Today Cole underwent Endoscopic surgery for Sagittal Craniosynostosis. We only found out what Cole’s condition was 6 weeks ago. He was 2 months and after continuously questioning his pediatrician as to the shape… read more
Hello, I’m Riley Adams. I am 20 years old and live in a small town in Wyoming. When I was 9 months old I was diagnosed with Multiple Coronal Craniosynostosis and had reconstructive surgery on my right eye socket and a metal plate was placed in my head to act as a soft spot, seeing as… read more
I am writing Ben’s story in the hopes that it will reassure some families out there who have to go through the same thing. Cranio Care Bears website and the listed success stories helped me so much in the time leading up to the surgery. For all the families out there going through this now,… read more
