Here is our story My daughter, Bryndal Franklin, was born on July 5, 2011. She is an only child. My husband and I began this journey during my 20 week gestational 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 & Chiari Malformation. 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 was fused as well as her lambdoid suture. We sought medical advice from CHOC and UCLA, and upon doing extensive research we found a wonderful doctor, Dr. Jeffrey Fearon, in Dallas, TX. Bryndal underwent her first CVR & Chiari Decompression surgery on November 1, 2011.
Shortly after surgery Bryndal was diagnosed with Central and Obstructive sleep apnea, so she had a tracheostomy on June 11, 2012. After Bryn’s follow up MRI in September 2012, Dr. Fearon said that it was time for Bryn to have her 2nd CVR & Chiari Decompression. That surgery took place on October 3, 2012. Bryndal is developmentally delayed, so she is currently in physical and occupational therapy. Bryndal will continue to have MRI’s every six months, so we will know when it’s time for another CVR. Even though this journey has been very difficult for my husband and I, we wouldn’t change one thing. Bryndal is our little cranio angel!