When a child is born in Alaska with a craniofacial condition, there is a good chance the family will become acquainted with the Foundation for Faces of Children. That is the goal of Cheri Scott, one of the founders of Stone Soup Group, an organization based in Anchorage that assists families who care for children with special health care needs.
“The Foundation’s videotape, Understanding Cleft Lip & Cleft Palate: A Guide for New Parents, is one of our favorite things to give out because it lets parents learn from other parents,” says Scott, who helped found Stone Soup Group in 1992. “They take the video back to the village, and they visit the Foundation’s web site, which is so easy to use. People who live in rural Alaska tend to be computer-savvy; it’s how they maintain contact with the world.”
Certain Alaskan communities have a relatively high rate of cleft lip/palate. “The parents need someone to talk to, not only for reassurance but to understand the treatment timeline,” says Scott. To that end, Stone Soup Group sends “parent navigators” to the hospital to visit with families of newly diagnosed children. “We try to help parents see beyond the current crisis—to step back and see the big picture.”
Scott had to do precisely that when she and her husband adopted a three-year-old child. Justin has multiple medical problems including cerebral palsy, fetal alcohol syndrome and vision and hearing impairment, but his atypical sub-mucosal cleft palate went undiagnosed for several years. “This drastically affected his ability to communicate,” says Scott, who encountered many difficulties as she tried to get her son the care he needed.
Later on Scott discovered the Foundation, which has become a welcome resource in her organization’s quest to help families throughout Alaska. “Our job is to locate useful, accurate information and to get families working together to help each other,” she says, noting that their goals are similar to those of the Foundation. “I’m struck by the professional quality of everything the Foundation produces. We take copies of their video to the local clinic and area hospitals and put them in the hands of nurses and newborn intensive care unit staff, as well as on the shelves of the lending library at Children’s Hospital in Anchorage.”
Scott knows firsthand how craniofacial conditions can challenge a family. “Thanks to the Foundation for Faces of Children, parents learn to ask questions, to get second opinions and to not give up,” she says. “When that happens, we see how so many families benefit.”
For more information on cleft palate, click here.