Amelia’s pediatrician first noticed a lack of a soft spot on the top of her head at her 4 month check up. So we were sent to a neurosurgeon who confirmed what we had already thought, metopic craniosynostosis. We were devastated but immediately started to do some research and felt so much more at ease… read more
We found out Landon was going to have a “long head” when I was about 32 weeks pregnant – during an ultrasound that was a follow up to a car accident I was in at 24 weeks. My doctor didn’t elaborate on what that meant, she just kept saying “it’s not something we’d have to… read more
I had our third baby boy on May 28th and we noticed after we brought Isaac home from the hospital that he had a really long head and a slight ridge across the top as well. I thought it would work itself out as he grew. He had his 2 month appointment and I mentioned… read more
My daughter Sofia was born with a condition called cranio facial nasal dysplasia syndrome. At 10 months old she underwent skull surgery at the BC Children’s hospital here in Canada to open both side sutures that had fused prematurely. She also had her forehead bone brought forward to give her head a more normal natural… read more
I noticed the difference in Londyn’s head shape and the palpable ridge immediately after birth. I am an RN by trade, so I didn’t want to be crazy mom/nurse and diagnose my child so I followed the doctor’s advice and pushed it off as birth trauma. Her head shape did not change after 2 weeks, so after lots… read more
When Noah was born, the doctors had to get a second opinion on his head circumference, but eventually decided that it was “normal.” At his four month appointment, his pediatrician noticed the growing narrowness of his forehead. He suspected craniosynostosis and referred him to Seattle Children’s Hospital. A CT Scan resulted in his official diagnoses… read more
James came to us 4 weeks early. My water broke in the middle of the night and he arrived about 24 hours later on April 28th weighing 5lbs 12oz. Boy was ADORABLE! We did notice his head was a bit long but thought it was just from a natural childbirth. When we went for his 1… read more
Quinn plunked on the warm sand at Grand Haven State Park, clutching a nearby stick. She scooped her hand into the sand, thrust it above her head, and grinned as grains slowly sifted through her grip. Her mother, Laura, watched Quinn’s next move carefully. The just-turned-1-year-old bounced to her knees and crawled into the gentle lapping… read more
Ezra James was born 10/24/13. His Pediatrician had noticed something strange with his head shape when he was about 5 months old. She immediately sent us to get an x-ray. When she got those results she told us that she wanted us to go up to OHSU for a CT scan. I then became extremely… read more
We always thought Jack had an odd head shape. His head was very narrow and he had a prominent forehead. We asked about it at every doctor appointment. At his 4 month appointment, we finally got a recommendation to see a craniofacial specialist. We made the appointment to see the specialist and prepared ourselves… read more
Aubrey was born 1/27/15. My lactation consultant noticed her head shape at my visit when she was about 1 1/2 weeks old. We then brought it up to our pediatrician at our next visit, and we were referred to the University of Michigan. At 2 months old at her visit they informed us she had… read more
Craniosynostosis was a term we had never heard of until Jack’s 2 month doctor visit. There was nothing of concern with Jack up until the point of the doctor and I reviewed his growth percentiles. His height and weight were aligned as they like to see however, his head was coming in at 99%. At… read more
