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 us to a specialist. The specialist found the cerebellum, but stated that my daughters head shape was odd. We were then referred to UCI Medical Center and that is when we were told about Craniosynostosis. The doctors originally thought that my daughter had Pfeiffer syndrome, but the genetic testing came back as 6P duplication. Her right and left coronal suture is closed as well as her lambdoid suture. We sought medical advice from CHOC and UCLA, and upon doing research we found a wonderful doctor, Dr. Jeffery Fearon, at Medical City Children’s Hospital in Dallas, Texas. Bryndal underwent her first craniofacial reconstructive surgery on November 1, 2011. Shortly after that Bryndal was diagnosed with Central and Obstructive Sleep Apnea, so she had tracheostomy surgery on June 11, 2012. Bryn’s second cranial vault and Chiari decompression surgery was on October 3, 2012. Bryn will need more reconstructive surgeries in the future, so in the meantime we will continue to have MRI’s done every six months to see how everything is growing. Please continue to pray for our sweet little Cranio Angel.