Offers comprehensive care for children like hero of new film
The inspiring new movie Wonder, which opened nationwide on Nov. 17, tells the story of a fifth-grade boy with a facial deformity who enrolls in a mainstream school for the first time in his life.
The clinical team at the Rush Craniofacial Center in Chicago is hoping the film will help educate the public and lift the spirits of the many children, and their families, who deal every day with the physical and emotional effects of looking significantly different from their peers.
"Your face is how the world interprets you," says Christina Tragos, MD, a craniofacial surgeon and co-director of the Rush Craniofacial Center. When children's faces are disfigured, either from birth defects, abnormal growth patterns, injury or disease, their appearance can have a devastating effect on the way others relate to the kids. "It can lead to people not giving them a chance," Tragos says.
‘The anomalous is normal to us’
The film’s protagonist, 10-year-old August "Auggie" Pullman, suffers from Treacher Collins syndrome (TCS), a rare genetic condition that affects the development of bones and other tissues of the face, often including the ears, eyes, jaws, upper airway and palate. The film is based on the 2012 children's novel, Wonder, by R.J. Palacio.
TCS is just one of the more than 20 recognized conditions that cause craniofacial abnormalities. It’s rare, affecting an estimated one in 50,000 people, and its severity can vary greatly.
Two far more common conditions are cleft lip and palate — they can occur together or separately, on an average of once in a thousand births. These anomalies also result in varying degrees of facial involvement.
The Rush Craniofacial Center treats hundreds of patients with these and other conditions each year, providing care for children from throughout the Chicago area and the Midwest. "The key is, we know what to do. The anomalous is normal to us," Tragos says.
The children’s difficulties are "problems of function, not just of appearance," Tragos says. "Children may have trouble breathing, eating, speaking, sleeping and hearing."
The center takes a team approach to address these needs, providing care by specialists in orthodontics, plastic surgery, pediatric otolaryngology, speech pathology, audiology, neurosurgery, genetics, ophthalmology and psychology. Often, children who come to the center need all these services.
Nicole Heller, DNP, a nurse practitioner and the center's coordinator, makes arrangements with care providers outside the Rush network, handles any necessary troubleshooting, and keeps all the gears moving smoothly. "I know every family member, and I want to be their support system," Heller says.
Surgery, advanced implants transform life for teen with TCS
Tikyle Yates, a 16-year-old with a severe form of TCS, is a longtime patient whose life has been transformed by the center. During two separate 15-hour reconstructive surgeries in February, Tragos changed the contours of Yates' face. She also inserted two permanent, titanium temporomandibular joints (TMJ) — hinge joints that connect the jaw to the skull — which have made it possible for Yates to open his mouth more than a crack for the first time in his life.
"That's huge, and it's new," Tragos says. "There are fewer than 30 children in the country with titanium TMJ, and much fewer with bilateral ones."
Yates had undergone previous surgeries that were not able to help with his limited ability to open his mouth and his breathing issues. The recent operations performed at Rush have brought his face into a more normal alignment.
He's enjoying new foods, and he's hoping with time and training to eat normally and to speak understandably, says his mother, Tonyana Rockett. He'd like to try eating chicken wings.
A smart young man who loves school, Yates has been through a lot, Rockett says. But after his surgery, "he's already becoming more outgoing. I'll be forever indebted to Rush. I could never do this without a hospital like Rush. They have been wonderful."
Center uses advanced technology to customize solutions for patients
Yates’ TMJ were planned using 3D technology, an example of the cutting-edge technology the Rush Craniofacial Center utilizes. Center co-director Alvaro Figueroa, DDS, MS, an orthodontist, has been a developer of innovative therapies to treat children with cleft lip and palate and other facial anomalies. Some of the techniques use 3D technology to fabricate devices to guide surgeons during complex facial surgical procedures. Several of these developments have gained international acceptance.
One of them is the use of an external "distractor," a headgear-type technology that takes advantage of the body's ability to heal. "If you cut a bone and slowly stretch it, new bone will grow," Tragos says.
The center's young patients often have one-of-a-kind anatomical structures, meaning that in some instances bones, muscles, nerves and blood vessels may not be where the surgeon is expecting to find them. "We engineer solutions specifically for these kids," Tragos says.
For surgeries where she'll be cutting and repositioning bones, Tragos and Figueroa first simulate the operation on a virtual copy of the face and head using CT scans and 3D photographs. Surgical guides and bone fixation devices are designed virtually and 3D printed to assist her during the actual surgery. A similar planning and manufacturing process was conducted to plan, manufacture and insert Yate’s titanium temporomandibular joint replacements.
In addition to the 3D printer technology Tragos contracted to create Yates' TMJ joints, she also ordered 3D acrylic guides made to hold Yates’ cranium in place during the surgery to help her navigate Yates' unique anatomical structure. She had to remove some "anomalous" bone, and grow new bone using a distractor.
‘Just love your kid no matter what’
Not every child needs that level of intervention, but "the kids we see earlier in life get better results," Tragos says. The ideal time for that first visit to the center is within two to three weeks of birth, she adds. The center offers prenatal consultations to start planning before the child is born.
The center’s specialists have the expertise to make the interventions a newborn needs while looking ahead to how that child will develop over time. "It's not just what you see right now. You have to understand how the skeleton and the soft tissue of the face will change overtime," Tragos says.
While parents understandably may be upset that their child has a craniofacial abnormality, the story Wonder tells offers encouragement that these children can live largely normal lives, and the Rush Craniofacial Center is available to help them achieve it.
Rockett also offers advice for parents of children like her son: "Just love your kid no matter what! We didn't ask for this to happen, but I wouldn't have it any other way. Our experience has molded my life for the better."