Infant Born with Rare Condition That Separates Face in 2 Halves Due for Life-Changing Surgery to ‘Button’ Him Up

Brody Shain was born with a severe bilateral cleft lip and palate, plus a birth defect that caused his brain tissue to grow through his skull

Nearly a year after an infant was born with a rare condition that caused his face to be split in half, his family is preparing for a life-changing surgery that could help him on the path to becoming “buttoned up.”

When Brody Shain, now 11 months, was born, he had a a severe midline facial cleft, meaning his face is literally split down the middle, with a hole where his upper lip and tip of his nose should be.

“When he came out, we were all in shock,” his mother Brandy, who hails from the Dallas suburb of Rockwall, told NBC-DFW.

Brody Shain’s family is preparing for his life-changing surgery.
GoFundMe

Along with the cleft lip and palate, Brody was born with encephalocele, a “birth defect where brain tissue grows through an opening in your newborn’s skull,” per the Cleveland Clinic.

It can be life-threatening, but surgery can help treat it. In Brody’s case, it’s causing a bulge in the roof of his mouth where brain tissue is pushing through, and requires Brody to be fed through a feeding tube.

Brandy, who quit work to be Brody’s full-time caretaker, said that her son is qualified for a surgery conducted by Dr. Jeffrey Fearon, a pediatric plastic surgeon at Medical City Children’s Hospital in Dallas.

Fearon has conducted twelve such procedures — the condition is rare, affecting about one in 100,000 births, according to NBC-DFW — in an effort to bring together the different halves of the face.

“The initial surgery is planned to first repair the encephalocele (a portion of the brain hanging down below the floor of the skull into his mouth). A second operation will move the two halves of the face together to repair the midline facial cleft,” Dr. Fearon tells PEOPLE in a statement. “Additional smaller operations (3 or 4?) might focus on improving the appearance of the nose and upper lip. “

He adds, “I believe his prognosis is quite good.”

However, the first procedure is just the beginning. Brody will need multiple surgeries, and the first one carries an out-of-pocket price tag of $15,000. According to NBC-DFW, Brody’s first surgery is scheduled for late September and will fall three days before his first birthday.

A GoFundMe has since been established for the family’s medical costs. Organizer Jody Crocker shared in the fundraiser description that the initial surgery “is a major step toward allowing [Brody] to breathe, eat, and grow without the constant barriers of a feeding tube and oxygen.”

Brandy told NBC-DFW, “The big picture is hard to wrap your mind around, but as we go along, we just take it each day. With these surgeries coming up, those encephalocles are going to be removed, the palate is going to be fixed, and that’s one step closer to them getting to close up his face. The next surgery will be the closing of his face.”

She added, “I can’t wait to see what he’s going to look like.”