Josie Grace Owen’s lifesaving surgery rearranges skull “like a jigsaw puzzle

In a remarkable medical journey, three-year-old Josephine “Josie” Grace Owen from Tennessee, USA, has undergone groundbreaking skull surgery to correct a rare musculoskeletal condition called Antley Bixler Syndrome (ABS). Josie’s skull, affected by ABS and Craniosynostosis, was meticulously rearranged “like a jigsaw puzzle” in a £3.1 million ($4 million) treatment that aims to provide her with a chance at a more normal life.

Josie’s condition, affecting only 30 patients globally, involves deformed skull plates and disproportionate facial bones. Craniosynostosis, where the skull bones fuse prematurely, further compounded the complexity of her condition. As she grew, Josie’s skull became increasingly misshapen.

Born on May 29, 2020, Josie spent 62 days in the Neonatal Intensive Care Unit (NICU) and underwent three major surgeries shortly after birth to save her life. The latest surgery, conducted in June 2023, involved removing, rearranging, and reattaching her frontal bone, resulting in an X-ray that resembled a carefully pieced-together jigsaw puzzle.

The comprehensive procedure utilized dissolvable screws to secure Josie’s forehead, with the expectation that her bones will gradually merge into a mostly solid piece over the next few years. The extensive treatment has incurred substantial costs, with the family receiving a bill of $50,000 (£40,000) for the recent surgery alone.

Despite their private insurance offering minimal coverage, the family is grateful for state insurance, which has prevented financial ruin. Josie’s medical bills exceeded four million before the end of 2020, underlining the critical role of state insurance in mitigating the financial burden.

Josie’s condition, ABS, also involves choanal atresia, resulting in blocked nasal passages. She requires a tracheostomy tube for constant assistance in breathing. Deformed feet limit her leg movement, making her susceptible to injuries. Living in Tennessee, the family must contend with tornadoes, necessitating a specially prepared tornado bag with essential medical supplies for Josie.

Josie’s loving and empathetic nature shines through, as she supports her siblings and engages in playful activities. The family’s hope is for Josie to lead a somewhat normal life, despite the anticipated need for at least a dozen more major surgeries. The medical journey continues, driven by the aspiration that Josie will one day achieve independence and experience the joys of life.