Treacher Collins Syndrome: Texas Children’s Hospital in Austin Becomes Global Center for Craniofacial Surgery

When Henry went swimming this summer, it was the first time he had ever been able to submerge his head underwater.

“I did my first underwater swim in my whole life,” 10-year-old Henry told a reporter for the Austin American-Statesmen, where his story was featured in August.

Henry was born with Treacher Collins syndrome, a rare genetic condition that affects the development of the head and face and often causes problems with breathing and swallowing. Doctors in Greenville, S.C., where Henry lives, intubated him immediately and then, at 10 days old, gave him a tracheostomy to help him breathe and a gastrostomy tube to help him eat.

In the following years, Henry’s parents, David and Tara, took him to doctors at Duke Children’s Hospital in Durham, N.C. for surgeries to repair his face, including his cleft lip and palate and the structure of his eyes. But they were told it was unlikely his trach could ever be removed.

Thankfully, Henry’s parents were referred to Dr. Richard Hopper, an internationally recognized craniofacial plastic surgeon whose pioneering work has been successfully removing trachs from children like Henry to allow them to breathe naturally. Formerly a specialist at Seattle Children’s Hospital, Hopper relocated to Texas to create a state-of-the-art craniofacial center at Texas Children’s Hospital in North Austin. Now families from around the world — as far away as Hong Kong and London — and from across the US have been coming to Austin to seek care for their children.

"Many of my team members came with me to Austin," Hopper said. “We saw an opportunity to build a groundbreaking, premier craniofacial center that would treat patients from around the world, and the news is spreading.”

Henry’s treatment has been a resounding success. His mother, Tara, told the Austin American- Statesmen that it’s been “life-changing for Henry, for us. He has a new independence that never would have been a possibility without Dr. Hopper.”

Austin becomes global center for craniofacial surgery

Texas Children’s is the largest children’s hospital in the nation, with 5.2 million patient encounters annually, more than 120 locations throughout Houston, Austin and Central Texas, and 17,000 world-class employees, faculty, specialists and pediatricians serving children and women. Texas Children’s is consistently recognized as a leader in pediatric care, nationally ranked by U.S. News & World Report’s Best Children’s Hospitals survey and ranking number one in Texas for 16 consecutive years. Its new hospital in Austin — one of the fastest-growing cities in America, whose location in the center of the country makes it especially convenient for travel — was built to expand access to care for even more families who need the expertise of doctors like Richard Hopper.

“Texas Children’s has a global reputation for excellence,” said Hopper. “So the opportunity to create a new craniofacial center at Texas Children’s in Austin was an opportunity I couldn’t pass up.”

In Austin, Hopper is honored to care for a growing population with so many young families who will benefit from his team’s services. It’s a chance to diagnose suspected craniofacial anomalies while a child is still in the womb and design successful and coordinated treatment plans from the moment of birth onward. With Henry’s condition, surgeries have to be done in stages as a child grows.

Hopper is the Medical Director of Plastic Surgery at Texas Children’s North Austin Campus and a full Professor at Baylor College of Medicine in Houston. Within the next five years, he and the other experienced Texas Children’s craniofacial surgeons plan to start a program for fellows to train in Austin like he did in Seattle — and, because Texas Children’s North Austin Campus was built with the ability to double in size, to facilitate a large expansion of the craniofacial center.

Hopper is the former President of both the American Society of Craniofacial Surgery and the International Society of Craniofacial Surgery. His research interests have resulted in more than 100 publications focused on image-based outcome studies for craniosynostosis and complex craniofacial procedures as well as device design for cleft and craniofacial care. He has trained 38 craniofacial fellows who practice nationally and internationally. But the most rewarding part of Hopper’s work is making a life-changing difference for patients like Henry. Not only is Henry now able to swim for the first time and breathe through his mouth, this will be Henry’s first school year in which he won’t need a nurse with him and his first chance to ride the school bus alone.

“Each day I count myself fortunate to be able to work with children with craniofacial challenges,” says Hopper. “Their spirit, courage and dignity give me the energy to always do my best in the clinic and the operating room. We take our faces for granted when we see, breathe, talk and smile. These children do not. So when they smile, and you've been able to help that smile, it lights up the room.”

Refer your patients to Texas Children’s through our online portal or by calling 832-TCH-CARE (832-824-2273).