Stories

Travis was diagnosed at 3 weeks old with Left Coronal Synostosis. At 3 months old he had an Endoscopic Strip Craniectomy, done at Walter Reed National Military Medical Center. At 15 months he was finally helmet free. He had a crazy year of weekly hemet appointments, physical therapy, speech, opthalmology, and ENT appointments. At 18 […]
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Our oldest son, Ben, was diagnosed with craniosynostosis of the right lambdoidal suture at 19mo. He had open surgery in July 2012. Recovery was very easy after the 5-day hospital stay and he is now a normal 5yr old boy! Our third son was diagnosed with metric craniosynostosis at his 1-mo well visit. He had […]
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Nathaniel was born by emergency c-section in February 2015. Even though the doctors instantly recognized that he had a large head; (it was even mentioned during my 20 week scan) no one picked up on his sagittal synostosis until his 4 month check-up. After the initial shock and panic, I found CAPPSkids.org and other websites […]
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When you see two pink lines on a pregnancy test, so many emotions run through your body of joy and excitement! The planning and shopping begins and you get excited over booties and pacifiers. The thought of your baby having a birth defect is not on the top of your list. Birth Defects?? No, not […]
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Sienna’s Cranio journey. Hi my name is christy and my daugther Sienna Addison was born on July 2, 2012. Right away I knew something was wrong with her head/eye, but no one would listen to me. Everyone but me thought she looked fine and that her face being distorted a little was normal. She was […]
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Jackson was born on August 1st, 2012, one day before his due date after a healthy, normal pregnancy and delivery. Around one month my husband asked for my opinion on Jackson’s head shape. Why did it still look as though it was long and narrow from delivery? We couldn’t remember when our daughter’s head rounded […]
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Leigha was not born the little girl I had envisioned in my dreams. The elation that I felt upon the announcement “It’s A Girl” was quickly overshadowed. I was robbed of normal motherhood delights by our family practitioner puzzling over her looks, and I was confused by a quick explanation that her features resembled those […]
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Valerie was born at 36 weeks . I had a very normal pregnancy. Her tummy was destended at birth and at her 1 mth check up we found out she was constipated. at 5 weeks old Valerie had hearrt surgery and at 41/2 mths old she went in to have surgery for sagittal cranio reconstruction. […]
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At Alyssa’s routine 2 month well baby visit on April 29, 2003, the doctor noticed that her head had a flattening on the back right side. It was nothing totally abnormal we were told, just probably because she preferred to hold her head to the right side. They called this torticollis, or a shortened neck […]
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(I’m not located in the USA, I am from Canada, but I still wanted to share my little girls’ story) I got pregnant with my now five-year-old daughter, Evangeline, at the age of 16. She was brought into this world on May 12, 2007 via emergency c-section, due to the large size of her head, […]
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