Bryndal F. (17 Months old) Multiple Suture Synostosis (Coronal & Lambdoid), Chiari Malformation, & 6P Duplication Our daughter, Bryndal, was born on July 5, 2011. She is our only child. My husband and I began this journey at my 20 week appointment. We were told that they could not find my daughters cerebellum and referred… read more
I was told in June 2012 at 9:30pm at a pediatrician visit~Morgan had croup and her Dr met me at the office instead of sending me to the ER. It was then she suggested to me that she thought Morgan has what is called “craniosynostosis”. “Mom to a mom, her head looks oddly shaped”…. I was… read more
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… read more
After a somewhat complicated pregnancy and a very complicated labor, my wife and I were given the greatest gift of our lives; Aiden was born on 12 May 2012. The birth was stressful on his tiny body and he had a hematoma on the back of his head, landing him to a weeklong All Inclusive… read more
Graci was born on January 20, 2012. She was born at 37 weeks and 5 days, but other than that, we had a normal pregnancy and delivery. We were so excited to welcome this perfect little angel into our lives. We noticed right away that she had a slight rasp when breathing but the doctors kept… read more
Matthew was born 5 weeks early on April 10, 2012. He was in the NICU for about a week with breathing difficulties and had a CPAP on his head. When we brought him home I noticed his head shape was odd. I thought if was from the CPAP. After all, no one in the NICU or… read more
On July 20, 2011, my husband and I were given the best gift of our lives, William was born! Immediately he brought joy to all those around him. Everywhere we went people stopped us to tell us what a handsome little man we had. When Will was almost 2 months old, I started thinking his head might… read more
Her ñame is Alexa, she was born with right coronal synostosis. She had surgery when she was 4 months old (CVR & FOA). She’s a really happy little princess. Now she’s facing her second surgery, this time to improve the alignment of her eyes, and her pretty bumpy forehead. She’s going to wear bone distractors… read more
Joanna had her surgery at just under 6 months old to correct a prematurely fused metopic suture. She had a CVR and FOA, like most metopic babies, performed by a cranio facial surgeon and neuro surgeon here in Normandy, France. She was out of intensive care after two days, and home and smiling after four… read more
I noticed Matthew’s elongated head at approximately two months but everyone assured me, “babies have funny shaped heads.” The nagging feeling just kept growing, but everyone kept reassuring me, that as a first time mother, I was just being hyper. At Matthew’s four-month check-up, I asked the doctor about the “egg” shape and growing bump… read more
Lucy’s craniosynostosis journey began in Fall 2011, when we noticed that her head shape was changing. A bump, or protrusion, was forming in the back, and her forehead became more prominent. Her head was growing more elongated from front to back. We kept an eye on it for a few months, and then decided to… read more
Mackenzie M. (Twin) DOB 7/13/2012 Date of Surgery: 10/18/2012-Endoscopic Type of Cranio: Sagittal Craniosynostosis Our baby girl Mackenzie has what is called Craniosynostosis (Sagittal Sutures). It is a condition where her skull along the Sagittal suture (along the top of her head) has already fused together in utero. I believe this happened because she spent… read more
