Beckwith-Wiedemann Syndrome (BWS) is a rare congenital growth disorder typically characterized by overgrowth. BWS occurs in approximately 1 in 11,000 births. The severity of this disorder varies by individual, which can now be viewed as a spectrum. Some children have all the  characteristics, while some only have a single characteristics. Some children who have milder characteristics of BWS may never receive a diagnosis.  BWS signs and symptoms include a large size at birth, macroglossia (large tongue),  hypoglycemia (low blood sugar), taller than-average height during childhood, hemihyperplasia (overgrowth of one side or one part of the body), defects of the abdominal wall, enlarged abdominal organs, and earlobe/behind the ear pits and creases.  BWS  leads to an increased risk of childhood cancers, most commonly Wilms tumor (kidney tumor) and hepatoblastoma (liver tumor). Children diagnosed with BWS frequent a team of specialists to ensure their health and wellbeing. Routine cancer screenings and bloodwork are completed every 12 weeks to allow for proactive treatment as needed.

CHOP BWS Resource

Boston Children's BWS Resource

To learn more about Beckwith-Wiedemann, please visit BWS Resources.