Nearly a year after a baby was born with a rare condition that caused his face to be split in half, his family is now preparing for a surgery they hope will transform his future.
When Brody Shain, now 11 months old, entered the world, doctors discovered he had a severe midline facial cleft — meaning his face was divided down the middle, leaving a gap where his upper lip and the tip of his nose should be.
“When he came out, we were all in shock,” his mother Brandy, who lives in the Dallas suburb of Rockwall, told NBC-DFW.
Along with the cleft lip and palate, Brody was also diagnosed with encephalocele, described by the Cleveland Clinic as a birth defect in which brain tissue grows through an opening in the skull. In Brody’s case, the condition has created a bulge in the roof of his mouth where brain tissue is pushing through, making it impossible for him to eat on his own. He currently relies on a feeding tube.
Brandy left her job to care for Brody full-time and says her son now qualifies for surgery with Dr. Jeffrey Fearon, a pediatric plastic surgeon at Medical City Children’s Hospital in Dallas.
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According to NBC-DFW, Fearon has performed a dozen such operations — an extraordinary number given the rarity of the condition, which occurs in roughly one out of every 100,000 births. His approach is to gradually bring together the two 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),” Dr. Fearon told PEOPLE in a statement. “A second operation will move the two halves of the face together to repair the midline facial cleft. Additional smaller operations — three or four — may follow, focusing on refining the appearance of the nose and upper lip.”
He added that he believes Brody’s prognosis “is quite good.”
Still, the road ahead won’t be simple. Brody will need multiple surgeries, and the first alone comes with an out-of-pocket cost of $15,000. His first procedure is scheduled for late September — just three days before his first birthday.
To help with expenses, family and friends launched a GoFundMe campaign. Organizer Jody Crocker explained that the first 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 encephaloceles 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.”
