Domonique’s Journey
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Domonique and his twin brother, Douglas, were born at only 25 weeks gestation, each weighing two pounds. The boys quickly were shuffled to the neonatal intensive care unit where they were tucked inside an incubator to be nurtured until they were strong enough to go home. From the beginning, Domonique was more critically ill than his brother. While Douglas required medical intervention typical for helping premature infants to fully develop, his brother required intensive therapies and surgeries to help him survive. He was resuscitated immediately after birth, experienced bleeding on both sides of his brain, suffered from inadequate blood flow through his heart and was visually impaired.
"The doctors gave Dom six to 24 hours to live, so the first day was the hardest," says the twins' mother, Rochelle Stephans. "All I could do was tell myself, 'It'll be OK."
And it was OK. Domonique struggled through procedures and operations but somehow managed to make the trip home with his healthy brother three months later. To improve Domonique’s development, The Alliance for Infants and Toddlers, Inc. came into the home for regular physical, occupational, speech, vision, developmental and behavioral therapies. While the therapies were intense, the progress was slow. At the age of 3, when Douglas was toddling around and trying to form complete sentences, Domonique had not yet said his first word, was unable to crawl and had an aversion to touching new things. His sight was impaired, and his left arm was limp. "Dom didn't crawl; he wiggled across the floor on his belly," Rochelle remembers. "He was unable to communicate with words so he would bang his head or bite. And if an unfamiliar person tried to touch him, he would scream uncontrollably." By program design, The Alliance discontinued Domonique’s sessions when he turned 3. Their therapists suggested that Rochelle take the toddler to The Children's Institute (CI) for outpatient assistive therapies. "The Alliance knew that Dom was capable of more. They didn't hesitate to recommend The Children's Institute," Rochelle explains. "They were confident that the therapists would know what to do and would have access to equipment that would make life easier for Dom and our family."
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Since 2001, Domonique has visited CI for physical, occupational and speech/language therapies that incorporate the use of assistive technologies. The first year of therapy was trying. Domonique would tantrum without his mother, so early sessions were conducted with Rochelle holding her son as therapists encouraged him to touch new objects or mimic sounds. It would be months before Domonique allowed his therapists to touch him, and it took a year before he finally took his first steps. He communicated by pointing to pictures before he allowed therapists to manipulate his mouth in preparation for his first word – “mamma." "The process has been long, but Dom's therapists have been incredible," says Rochelle. "They've all stuck with him. I'm sure it's been frustrating at times, but they never give up.”
The therapists' persistence and Rochelle's patience has paid off. Domonique attends the Western Pennsylvania School for the Blind and knows the entire alphabet and can count up to 50. He's become more eager to communicate, so he uses a device to help him communicate. Called DynaVox, the speech-output device has been invaluable in helping Domonique express himself and helping his loved ones understand. He's transitioned from a manual wheelchair to a motorized one and even uses a walker for shorter trips. "I don't even have to bring the wheelchair to therapy anymore. Dom uses his walker to get from the car to his sessions," Rochelle says excitedly. "And when I walked into therapy the other day, Dom was on the treadmill.” As Domonique celebrates his accomplishments, his twin brother is always right there with him. Douglas roots for his brother during therapy sessions and helps him with everything from making an after-school snack to turning up the television. While the boys each have their own beds, they often prefer to sleep together, telling each other "I love you" before falling asleep. In between plays on the football field, Douglas shouts "hello" to his brother on the sidelines.
"For as different as they are, they're still very much typical 8-year-old twin boys," says Stephans. Domonique's journey is far from over, but like his therapists, Rochelle recognizes his potential and is committed to helping him realize it. There will be more long sessions, new assistive equipment and challenges to overcome; however, all Rochelle has to do is think back to when the doctors said Domonique wouldn't survive, and she realizes just how fortunate she is. "I can't help but focus on how far Domonique has come," says Rochelle. "If it weren't for The Children's Institute and the technology they’ve introduced us to, Dom would be sitting at home. Instead, he has the full, happy life he deserves."
