Kelly (12) has a genetic condition called craniosynostosis, specifically Crouzon syndrome. She has a defect on the FGFR2 gene which has caused the bones of her skull and face to harden too quickly. This has restricted her brain growth and caused a secondary condition called a Chiari Malformation, where part of her brain has been pushed down into her spinal column area. She had surgery in June 2014, when craniofacial surgeon Dr. Fearon removed the back half of her skull, split it into pieces, then put it back together to give her brain room to grow, while neurosurgeon Dr. Price removed bone from around the brain stem to reduce the Chiari. While this was a major surgery for a 2 year old, we were so thankful to be able to get treatment for her! We thought our journey with cranio was over.
When Kelly was 9, she began having headaches. After being diagnosed with obstructive sleep apnea, we were told she would need a midface advancement. Her airway is too small because her facial bones have not grown enough. In 2022, she had a LeFort III surgery with a Halo Distrator to correct this. Dr. Fearon cut numerous bones in her face and applied an external frame. We then turned the screws on the device daily for a few weeks to trick her bones into making new bone. Once her face was in position to give her a large enough airway for the rest of her life, the frame remained on for a few more weeks, allowing the bones to solidify. She then had another surgery to remove the frame. This is one of the biggest and most complex surgeries a child with cranio can have.
Currently, Kelly is undergoing HyperBaric Oxygen Therapy to correct some cognitive decline she experienced after sustaining a concussion and multiple brain bleeds, which may have complicated by having her LeFort III soon after. We are grateful for prayers for the entire family as we continue walk this road with Kelly.
