My son Joseph was born on March 10, 2013. He was my third child and my only boy. He was “perfect”. A few days after my son was born we noticed his head was a weird shape but thought it was due to the fact that he was 9 lbs 2oz and had to squeeze… read more
On January 28th 2013 we welcomed our third child into the world. She was simply beautiful. We fell in love instantly and her big brother and sister adored her from the start. Within a few weeks after bringing her home, I started to notice that her forehead looked a little odd but since it was… read more
Our story with Craniosynostosis begins 12 hours after our son, Paxton was born. Paxton was born on March 21st after a great pregnancy and relatively easy delivery. Paxton was beautiful and my husband and I were so happy! We had no idea anything was wrong until 12 hours later when our doctor informed us that… read more
We were blessed with sweet Baby Londyn on December 28, 2011. Me and my husband were more than excited to see our baby girl. My son was also thrilled to be a big brother. She was perfect. She looked just like her daddy and was just the cutest most precious baby girl. Londyn saw her… read more
Taylor was born late on Thursday night, January 17, 2013 via C-section. We noticed right away the slight mis-shaping of her head, which the doctors told us was probably due to being in the birth canal for a long period of time. At her 2-week checkup, we saw a partner of our Pediatrician who had… read more
My sons name is Cameron and he was diagnosed with metopic craniosynostosis earlier this year. I had fought with my doctor about the ridge on his forehead. For 2 year my doctor told me it was normal until I demanded he send us to a specialist. We saw the specialist who then sent us up… read more
Our sweet little Liam was born May 24th 2012 a healthy 7lbs 12oz, 22 inches long at 38 weeks. Everything was normal throughout the pregnancy, the only thing was he dropped early around 7.5 months. Delivery was a little bit more work for me compared to my first because he was face up. I noticed… read more
On Wednesday, May 25, 2005, we knew as first time parents our world was about to change. We had no idea just exactly what that meant. I had a normal, healthy pregnancy. No complications and no morning sickness. That Sunday night, I started to have pain. No clue it was labor pain until Tuesday after… read more
Kassidy was diagnosed with sagittal craniosynostosis at 2 months old. She had her surgery a month after. It was a very scary time for me and her dad because Kassidy was and still is our only child. She had her surgery at All Children’s in Tampa, Florida. It’s been almost a year now and she… read more
I’m sending a photo of my grandson Michael. His celebrated his 2nd month since surgery on Mother’s Day.He had surgery on March 12. He’s beautiful, healthy and right on schedule. Thank you for everything you do to give support to families whose babies are facing surgery or have had surgery. You’re angels!!!… read more
My wife delivered triplets at 33 weeks 2 days. A week after they were born my wife got a call from the pediatrician, concerned about all 3 of our babies. Our boys, born with white hair and our daughter, born with a football-shaped head. The diagnosis, our boys have albinism, and our daughter, craniosynostosis. A… read more
On August 24, 2011, not only did our prayers get answered, but also our dreams came true for Seth, our 27- month-old son (at the time), to become a BIG brother. Owen was born at 7:22 AM by C-section. Within 45 minutes, my husband and I were able to hold him in our arms, and… read more
