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Christian Buchanan: Facing the World Despite Rare Facial Disorder

Midway through her pregnancy, Lacey Buchanan got some sobering news: There’s something wrong with your baby. The elation she’d felt just weeks before—it’s a boy!—was now abruptly deflating, like air escaping from a punctured balloon. An ultrasound showed that if her son survived, he would have facial abnormalities, the extent of which were not fully known. It would be far worse than she and her husband, Chris, could have imagined.

When little Christian was born four months later, parts of his face were absent, like missing pieces of a jigsaw puzzle. Where eyes should be, there was only tissue. He was blind. His nose was isolated from the rest of his face by a huge gap. Parts of his skull were exposed. His mouth couldn’t close.

“We loved him immediately but were heartbroken for our son,” recalls Lacey, now 26, of Woodbury, Tennessee.

Christian was born with an exceedingly rare condition estimated to affect only one-in-a-million children: Tessier cleft lip and palate, classifications three, four and five. The fault lines of his cleft extended, like a V, from his mouth into his eyes, leaving a gaping hole in its wake. At four days old, Christian underwent surgery in Tennessee to have a feeding tube installed, through which he still receives all of his nutrition. At just three months old, he had surgery to reconstruct portions of his face, giving him a smile.

Lacey and Chris knew that Christian’s medical journey was far from over. Virtually lacking a roof to his mouth, or palate, Christian needed to have a palate created in order to eat and speak better in the future. The procedure would be highly complex. The hole in Christian’s palate was nearly twice the size of what is ordinarily considered a wide cleft. It would need to be closed using the very limited tissue he had available, which hugged his gums and was, in places, no wider than a pencil eraser.

After an exhaustive year-and-a-half-long search, Lacey set her sights on Riley Hospital for Children at Indiana University Health, home to one of the country’s oldest and most experienced cleft and craniofacial teams, skilled at treating the rarest cases.

“We’ve encountered many challenges with Christian’s medical care,” says Lacey. “Because he is such a rare case, there aren’t many people who have seen anything like this or treated anything like this.”

She sought out Dr. Roberto Flores, Riley at IU Health’s director of craniofacial surgery, who has dedicated his career to performing complex craniofacial procedures in children.

“Dr. Flores was the most compassionate surgeon we had ever met,” says Lacey. “That alone meant so much to us, despite his ability, expertise and confidence in handling Christian’s care.”

So, on a bleary November day, the Buchanans packed up their SUV and drove from their Tennessee home to Indianapolis, where Dr. Flores performed the first of two procedures he customized to construct a palate for Christian. Hours later, Dr. Flores was sewing together the delicate flaps of Christian’s tissue, like a zipper.

“There is no recipe or formula for facial restoration,” says Dr. Flores. “Reconstruction is sculpture, architecture and mechanics of the flesh. For Christian, I have combined three types of cleft palate reconstructive surgeries, divided into two operations.” The second—to complete Christian’s palate—will take place this summer.

At present, Christian is an ordinary, rambunctious toddler who just celebrated his third birthday with an Elmo-themed party. Lacey let him sample the tiniest taste of frosting on his tongue, picturing the day he can eat a cupcake on his own. He loves to swim, play piano and sing Twinkle Twinkle Little Star. He loves his little brother, Chandler. He is also something of a celebrity, boasting nearly 200,000 followers on the “Lacey and Christian Buchanan” Facebook fan page.

Not everyone has been kind to Christian throughout his young life. Children and adults alike have been known to gawk, gasp and blurt out: What’s wrong with him? Some have called him a drain on society, asking why Lacey didn’t abort. Those comments no longer sting. Instead, they have inspired the Buchanans to advocate for their son and other children with disabilities. A third-year law student, Lacey plans to focus her career on helping families navigate the endless medical and legal complexities of caring for disabled children.

“When our face is changed by nature, accident or cancer, our view of ourselves as a person—and the way society interacts with us—can be affected in powerful and lasting ways,” says Dr. Flores. “My drive in craniofacial surgery is the responsibility to restore the face and one’s sense of self.”

Lacey seizes every opportunity to show the world that Christian possesses beauty, value and self-worth despite his birth defect. While he will need frequent speech therapy and several more surgeries down the road—orthodontic work, for example, and the creation of protective eyelids—Christian can look forward to a very bright future. For now, the Buchanans wait with great anticipation for Dr. Flores to make his final stitch, bringing Christian one step closer to achieving his next medical milestone.

“I hope people will see that we have fought and fought to find him the best care, and that’s what we feel like we have finally found,” says Lacey. “We’ve had to travel for it, but it’s so worth it to us.”

*Christian and Dr. Flores were recently featured on the national medical television show, The Doctors.

POSTED: 02/27/2014
CATEGORIES: TreatmentsCleft & Craniofacial Anomalies
TAGS: surgerykids

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