When the joy of having a new baby in the family is clouded by concern over a child’s developmental difficulties, researchers at Mississippi State University offer rays of hope. Through advanced study of the syndrome known as CHARGE, students and faculty are addressing educational, physical and social challenges faced by impacted families.
First described in 1979, the acronym "CHARGE" came into use for newborn children with the congenital features of coloboma of the eye, heart defects, atresia of the nasal choanae, retardation of growth and/or development, genital and/or urinary abnormalities, and ear abnormalities and deafness. These features are no longer used in making a diagnosis of CHARGE syndrome, but the name remains.
Today, CHARGE occurs in approximately one of every 10,000 live births.
At Mississippi State, ways to help children and families with CHARGE cope with such foundational needs as education, feeding, sexuality and family dynamics are being explored at MSU’s CHARGE Syndrome Research Laboratory. The lab is one of only two in the world focused on realizing positive outcomes of daily living for individuals with CHARGE and their families.
Doctoral and specialist-level graduate students in school psychology and undergraduate students from a variety of majors, including educational psychology, kinesiology and psychology, contribute to the lab work. Students gain training and experience as they amass data and develop information for CHARGE families. Graduates of the lab pursue careers and advanced education in medicine, genetic counseling, and school psychology, among other disciplines.
While many of the symptoms of CHARGE can be life-threatening, the MSU lab work is aimed at helping children with CHARGE live long, happy and productive lives. Students focus on basic needs such as education and behavioral outcomes.
Teams work to develop best practices for individual educational plans for children with CHARGE. Meanwhile, researchers collect information on families’ perceptions of the plan development. This groundbreaking research is aimed at improving the educational environment to best meet patient needs.
Addressing behavioral challenges is another focus area. The physical, cognitive and communicative losses in CHARGE can impact everyday behavior and elicit challenging behaviors, such as self-injury and aggression. At MSU, students are pursuing ways to assess the functions of these behaviors in order to develop individualized interventions to meet the needs of the individual with CHARGE. Their goal is to create ways to teach functional and supportive skills to replace challenging behaviors.
While much research has been done on divorce rates and other family dynamics related to genetic conditions, MSU is a pioneer in determining similar impacts on CHARGE families. Most recently, the lab is undergoing investigations into parental stress responses and post-traumatic stress disorder symptomology in parents of children with CHARGE. Many children with CHARGE undergo significant and frequent life-threatening medical procedures, outside of extended hospital stays upon their birth. It is unknown how these traumatic experiences impact parents and medical care provided to their children as they age.