Texas baby with rare birth defect to undergo transformative facial surgery

A baby born in Rockwell, Texas, is set to undergo transformative surgery for a rare birth defect that left his face split in two. Brody Shain, now 11 months old, was born with a severe bilateral cleft lip and palate, with the upper lip and the roof of his mouth not fully forming before birth. The infant also has an encephalocele in his mouth, a rare and serious condition where brain tissue protrudes through an opening in the skull, increasing the risk of infection and complicating feeding. The combination of conditions is extraordinarily uncommon, occurring in about one in 100,000 births.

Doctors at Medical City Children's Hospital in Dallas have proposed multiple procedures intended to improve both appearance and quality of life, starting with a first operation described as a major step toward allowing him to breathe, eat, and grow without the constant barriers of a feeding tube and oxygen. The family has set up a GoFundMe to cover the first surgery, with the initial goal of $15,000; supporters had raised well beyond that mark, totaling $19,962 as of Sept. 25. Brandy Shain said she cannot wait to see what her son will look like in time. "I can't wait to see what he's going to look like!" she told NBC DFW. She also described quitting her job to care for Brody full time, noting the six-person household is stretched to cover basic necessities.

A physician team led by Dr. Jeffrey Fearon is preparing to repair Brody’s bilateral cleft lip and palate and to remove the encephalocele. Fearon, who specializes in cases like Brody’s, has performed about a dozen similar surgeries previously. He explained the goal in practical terms: the procedure essentially aims to reconnect the two separated sides of the child’s face so that later steps can build toward a more typical appearance and function.

"My specialty is trying to get kids so they are good enough in their appearance that maybe they experience a kiss in a warm summer night, or they can become involved in a relationship with somebody else, which is really what gives life meaning," Fearon said. "So yeah, I think Brody has a good chance of getting to that point." The plan will unfold in stages, beginning with the removal of the encephaloceles and reconstruction of the palate, followed by subsequent surgeries to close and shape the facial architecture.

Brandy Shain described the personal toll of the medical journey, noting that while the family remains hopeful, the path ahead is financially and emotionally challenging. The first operation, scheduled for late September—just days before Brody’s first birthday—will be a milestone that moves him closer to breathing, eating, and growing without the constant reliance on a feeding tube and supplemental oxygen. The family’s fundraising effort underscores the broader realities faced by families confronting rare birth defects: multiple procedures, extended hospital stays, and substantial out-of-pocket costs that are not always covered by insurance.

Brody’s condition, while exceptionally rare, highlights the ongoing need for specialized pediatric surgical care. Bilateral cleft lip and palate affect the upper lip and palate on both sides of the mouth, often requiring staged repairs to restore speech, feeding ability, and facial symmetry. The addition of an encephalocele in the mouth further complicates treatment, elevating infection risk and demanding careful coordination among surgeons, neonatologists, and supporting care teams.

Medical City Children’s Hospital has emphasized that the team’s aim extends beyond appearance. The procedures seek to improve Brody’s airway, digestion, and growth, all of which are essential for long-term development. As the family navigates the months ahead, they remain focused on the incremental milestones that accompany complex reconstructive surgery in infants, while acknowledging the vital role of community support in making life-changing care feasible.