Much like Auggie in the 2017 film “Wonder,” Rokas has been dealing with debilitating physical deformities that have plagued him since he was born five years ago. He has shown such courage and good humor that when he, his parents and three-year-old sister came back to Cohen Children’s Medical Center today to thank the surgeon who performed his life-saving surgery, Rokas was presented with a medal for his bravery from the medical staff and a visit from his own personal superhero – Spider-Man.
The Lithuanian boy was born with Goldenhar Syndrome, a genetic condition that mainly affects the development of the eyes, ears and spine. Unlike the boy from “Wonder,” who had deformity on both sides of his face, Rokas’ symptoms only affected his right side, but were much more severe. And to make his situation even more delicate, Rokas was also born with a right cleft lip and palate – a hole in the lip and roof of his mouth. Considering that Goldenhar might be as rare as one case per 25,000 births, Rokas’ situation became even more critical.
Rokas had his cleft lip repaired as an infant but the rest of his facial deformity remained. It was a lucky series of events that eventually brought Rokas and his family from Lithuania to Cohen Children’s Medical Center in New Hyde Park, NY. A doctor in New York City works with an organization called the NextGenFace Foundation. That doctor’s wife has a Lithuanian friend who heard about Rokas’ issues. At that point, James Bradley, MD, a pediatric plastic surgeon who also works with NextGenFace, became involved and agreed to treat the boy. Northwell President and CEO Michael J. Dowling agreed that the health system would provide pro bono surgery and treatment, and the family arrived in New York on March 17th.
The first part of Rokas’ treatment plan, as designed by Dr. Bradley, was to repair his breathing and fix the sleep apnea that was impairing Rokas’ ability to sleep, eat and breathe. Because he lacked a proper jaw bone, Rokas’ tongue rolled back when he tried to sleep, a condition that made breathing almost impossible. To accomplish this, Dr. Bradley removed one of Rokas’ ribs during a surgery at Cohen on March 19. He used this rib to create a rib graft with both bone and cartilage, which were fashioned into a joint. Dr. Bradley also did fat grafting to the right side of Rokas’ face to help flatten the area in order to give a more normal appearance. Now, Rokas is able to breathe on his own – for many years, he needed the assistance of a tracheostomy – and is now getting used to eating and sleeping more normally, thanks to his new right jaw.
During their meeting today at Cohen, just two days before the family returns home to Lithuania, Dr. Bradley said, “Rokas will need a series of surgeries on his face to further minimize the deformities created by the combination of Goldenhar Syndrome and cleft palate. Rokas and his family are part of our family now; we are planning for a return trip to Cohen in six months for more surgeries. He is a normal boy, who likes to run and play with his scooter. We want to give him every opportunity to have a normal life.”
As Rokas raced around the room playing with a new Spider-Man action figure presented to him by Dr. Bradley and stopping for the occasional photo with the real Spiderman, his grateful mother, Ruta, said, “Every child deserves to have a life with the best chance for happiness and health. Thanks to everyone here at Cohen, my son Rokas is finally having his chance.”
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About the Steven and Alexandra Cohen Children’s Medical Center of New York
Founded in 1983, Cohen Children’s Medical Center is a 202-bed hospital dedicated exclusively to the care of children. The specialists in the hospital’s national and international programs cover an entire range of specialties. State-of-the-art care for children’s medical, surgical, and dental needs are provided in both inpatient and outpatient settings. The facility is the largest provider of pediatric health services in New York State, serving 1.8 million children in Brooklyn, Queens, and Nassau and Suffolk Counties. For the 11th consecutive year in 2017, Cohen’s was ranked among the nation’s best children’s hospitals in U.S. News & World Report's 2017-18 “America’s Best Children’s Hospitals” survey, achieving top-50 rankings in nine of 10 pediatric specialties.
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