Texas infant with rare birth defect set for transformative facial surgery

A baby born with a rare birth defect that has left his face split in two is set to undergo transformative surgery. Brody Shain, 11 months old, was born with a severe bilateral cleft lip and palate, and an underdeveloped roof of the mouth after a premature birth. The condition is exceedingly rare, appearing in about one in 100,000 births. The infant from Rockwell, Texas, also has an encephalocele in his mouth, a rare and serious defect in which brain tissue protrudes through a skull opening, carrying a risk of infection and often requiring careful medical management, including feeding support.

Doctors at Medical City Children’s Hospital in Dallas have outlined a sequence of operations intended to improve both appearance and quality of life. The initial procedure would correct the two halves of the face and remove the encephalocele, with the aim of helping Brody breathe and eat more easily and to grow without the ongoing barriers of a feeding tube and supplemental oxygen.

Beyond medical considerations, the family faces mounting costs. The first surgery carries an out-of-pocket price tag of about $15,000. Brandy Shain, Brody’s mother, has left her job to care for him full time, making fundraising essential. The family started a GoFundMe to cover the initial operation, budgeting the goal at $15,000. By Sept. 25, the campaign had surpassed that target, raising $19,962.

Dr. Jeffrey Fearon, a surgeon on the Medical City team, specializes in cases like Brody’s. He has completed roughly a dozen similar surgeries and said the work centers on reconnecting the two separated facial segments to improve both form and function.

Brody has spent months in the hospital fighting infections, and the first operation is scheduled for late September, three days before his first birthday. His mother described taking things one day at a time as they navigate the forthcoming procedures. The plan calls for removing the encephalocele, repairing the palate, and moving toward closing the facial gap in subsequent operations.

While the immediate goal is to address breathing, feeding and infection risk, the medical team emphasizes that successful reconstruction can also have lasting social and developmental benefits as Brody grows and interacts with family and peers. The family’s fundraising effort highlights the financial hurdles that can accompany a major pediatric surgical course, even for families with medical coverage, and illustrates the broader community support that often sustains such treatment.