Revolutionary Surgery Helps Children With Severely Restricted Airways Breathe Without a Tracheostomy

Subcranial rotation distraction is enabling children like Hannah Schow to breathe without a tracheostomy for the first time

A revolutionary surgery developed by Dr. Richard Hopper, surgical director of Seattle Children’s Craniofacial Center, called subcranial rotation distraction, is changing the lives of children who are tracheostomy dependent. Seattle Children’s Craniofacial Center is the first in the world to use subcranial rotation distraction to improve the airway and jaw position in children with Treacher Collins syndrome, a rare genetic condition that affects the development of a baby’s facial skeleton, skin and face muscles before birth. After inventing the new technique, Hopper is now sharing it with craniofacial surgeons across the world so they too can offer it to their patients.

“This surgery will be a paradigm shift for how we treat children with severely restricted airways,” said Hopper. “For children with a tracheostomy, the burden on a family is immeasurable. This new technique allows children to be freed from the limitations of their tracheostomy, enabling them to do all the activities kids should be able to do.”

Treacher Collins occurs in about one of 50,000 newborns, and while the severity of the condition varies, babies born with the condition often have problems breathing, chewing, swallowing, hearing and speaking.

The first-of-its-kind procedure combines two procedures, surgery and distraction osteogenesis, to correct and rotate the position of the jaw to open up a child’s airway.

“It’s unlike anything else we do as surgeons,” said Hopper. “During surgery the entire face is separated from the skull base and the two jaws are locked together. We create a metal hinge at the top of the nose that allows the distraction devices to rotate the entire face and unlock the breathing space behind the jaws and nose. The airway is like a narrow tunnel. Treatments in the past have only been able to remove single speedbumps within the tunnel. Subcranial rotation distraction essentially takes the whole roof of the tunnel and opens it. The airway results are something we hadn’t seen before, and we’ve also found the surgery results in positive cosmetic differences as well.”

Hannah Schow, 11, was the first patient with Treacher Collins syndrome to undergo this procedure. She lived with a tracheostomy since she was 2 weeks old, unable to breathe without a tracheostomy. When standard treatments were unsuccessful in opening her airway, the family thought they had run out of options. Fortunately, after traveling from Idaho to Seattle Children, the family learned she was a great candidate for Hopper’s subcranial rotation distraction. Her first and most complex surgery was performed at Seattle Children’s in August 2015.

This week, Schow had her tracheostomy removed and can now breathe for the first time without it.

“Getting her tracheostomy removed had been our hope since she was 2 weeks old,” said Hannah’s mother, Jennifer Schow. “Living with a tracheostomy is all she’s ever known. Without it she can swim under water, go to sleepovers or play softball for the first time. It’s a dream come true.”

Hopper adds, “Hannah is a pioneer. She’s paved the road for future patients that will benefit from this procedure. The benefits have opened up a new life for her, and I am so pleased she can now do all the things that she loves.”

If parents are interested in learning more about this new surgical technique as a potential treatment for their child with Treacher Collins, please call Seattle Children’s Craniofacial Center at 206-987-2208.

About Seattle Children’s

Seattle Children’s Hospital, Foundation and Research Institute together deliver superior patient care, advance new discoveries and treatments through pediatric research, and raise funds to create better futures for patients. Consistently ranked as one of the top 10 children’s hospitals in the country by U.S. News & World Report, Seattle Children’s Hospital specializes in meeting the unique physical, emotional and developmental needs of children from infancy through young adulthood. Through the collaboration of physicians in nearly 60 pediatric subspecialties, Seattle Children’s Hospital provides inpatient, outpatient, diagnostic, surgical, rehabilitative, behavioral, and emergency and outreach services to families from around the world.

Located in downtown Seattle’s biotech corridor, Seattle Children’s Research Institute is pushing the boundaries of medical research to find cures for pediatric diseases and improve outcomes for children all over the world. Internationally recognized investigators and staff at the research institute are advancing new discoveries in cancer, genetics, immunology, pathology, infectious disease, injury prevention, bioethics and much more.

Seattle Children’s Hospital and Research Foundation and Seattle Children’s Hospital Guild Association work together to gather community support and raise funds for uncompensated care, clinical care and research. The foundation receives nearly 80,000 gifts each year, from lemonade stand proceeds to corporate sponsorships. Seattle Children’s Hospital Guild Association is the largest all-volunteer fundraising network for any hospital in the country, serving as the umbrella organization for 450 groups of people who turn an activity they love into a fundraiser. Support from the foundation and guild association makes it possible for Seattle Children’s care and research teams to improve the health and well-being of all kids.

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