After experiencing a previous miscarriage, Jessica and Tom Masterson of Springfield, Missouri, were hopeful as their next pregnancy progressed normally in its early stages. At the 20-week ultrasound, however, technicians could not clearly visualize the baby’s head. A follow-up scan at 24 weeks, involving fetal medicine specialists, revealed significant abnormalities: the brain and skull were not forming properly. The family was referred to specialists in St. Louis for further evaluation, including genetic testing and advanced imaging.

The definitive diagnosis was acalvaria, an extremely rare congenital malformation characterized by the absence of the calvarial bones (the flat bones that form the roof of the skull), the dura mater, and associated muscles, while the skull base and facial bones remain present. In Owen’s case, there was no bony covering above the eyebrows and ears to protect the brain. Medical literature and the physicians involved described the condition as almost always incompatible with life; most affected infants do not survive birth or live only a few hours afterward. Surviving cases beyond the neonatal period are exceptionally rare.

Faced with the diagnosis, the Mastersons were offered the option of continuing or terminating the pregnancy. Guided by their religious convictions and a determination to give their child every possible chance, they chose to continue. Owen was born alive on September 13, 2017. Against expectations, he cried at birth. Although he has no skull bones covering the top of his head and his brain is protected only by skin and soft tissue, he has continued to live far beyond the predicted timeframe.

Owen requires intensive daily care. He is non-mobile and non-verbal, yet he smiles, laughs, and responds to his family. His parents and older sister Ryleigh have shared that they love him exactly as he is. In July 2021 the family welcomed another son, Judah (a name meaning “praise”), whom they describe as their “sunshine baby”—a child born after a sibling with a life-limiting diagnosis. Owen’s interactions with Judah have brought additional joy to the household.

Owen’s survival has been described by his family and by organizations that support families facing severe fetal diagnoses as a lasting miracle. His story highlights both the extreme rarity of prolonged survival with acalvaria and the profound impact of a family’s decision to continue a pregnancy despite a grim medical prognosis.

Sources

• On Angels’ Wings recipient story: “Owen: God’s Lasting Miracle”
• Springfield News-Leader reporting on Owen Masterson’s first birthday and family interviews (2018)
• Family accounts and medical descriptions of acalvaria diagnosis and outcome