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 program pursue careers in medicine, optometry and 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 nutrition.
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 feeding challenges is another focus area. The physical manifestations of the syndrome can compromise motor control and swallowing, which can impact mortality. At MSU, students developed a feeding scale with medical professionals to ensure proper nutrition. The scale is currently under review by a major medical journal.
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 such as the number of families who go on to have more children. While it is known that CHARGE is not linked to race or ethnicity, researchers in the MSU Lab are exploring whether socio-economic status and religion influence the occurrence of CHARGE.