Success Stories

Sofia – Bilateral-Nasal Dysplasia

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

Londyn – Sagittal

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

Noah – Metopic

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 – Sagittal

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 – Bicoronal

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 – Sagittal

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

Jack – Sagittal

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 – Sagittal

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

Jack – Sagittal

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

Caroline – Coronal

We are fortunate enough to live in Boston, MA and we were able to go to Children’s Hospital.  On 4/7/15 Caroline had a cranioectomy and a frontal orbital advancement.  She had been diagnosed with uni-lateral craniosynostosis.  The nursing staff LOVED the prayer chain and although you cannot see it in the pictures, we did have… read more

Gibson – Coronal

Our sweet baby boy, Gibson Robert Lewis, was born on November 12th, 2014.  The pregnancy, labor and birth all went pretty smooth.  He was born naturally and was three weeks early.  He weighed 7 pounds and 4 ounces.  Gibson wanted to come out 5 weeks early, but I was put on bed rest. He’s our… read more

Isaac – Sagittal & Lambdoid

My son was born with sagittal, bilateral lambdoid craniosynostosis, (nicknamed the Mercedes pattern). I knew immediately when he was born something was wrong. Luckily my doctor listened and we began researching. My son was diagnosed at one month in age and had a full cranial vault reconstruction at 4 months at Primary Childrens Hospital in… read more