Some children with BWS have speech problems that are usually related to hearing loss or macroglossia (an enlarged tongue). Our pediatric otolaryngologists in the Ear, Nose and Throat Program will be able to devise the best treatment plans for these children based on their specific condition.
Treating cancer as part of Beckwith-Wiedemann syndrome treatment
Although more than 80% of children with BWS do not develop cancer, they are more likely than children without BWS to develop certain types of childhood cancers such as Wilms tumor, pancreatoblastoma and hepatoblastoma. In addition, children with BWS have also developed the following forms of cancer (although these forms are much more rare): ganglioneuroma, adrenocortical carcinoma, acute lymphoid leukemia, liver sarcoma, thyroid carcinoma, melanoma, rhabdomyosarcoma and mesoblastic nephroma.
Kids with BWS only appear to be at an increased risk of cancer during childhood, typically up to 4 years old. After this age, the risk of developing cancer drops to average levels.
The importance of regular cancer screening
The good news is that cancers such as Wilms tumor, hepatoblastoma and mesoblastic nephroma can usually be cured if diagnosed early enough. Being able to treat cancer in an early stage gives doctors a great advantage and allows them to use safer treatment options. That is why we recommend children with BWS get regular cancer screenings.
We look for cancer by using an abdominal ultrasound, which uses sound waves to take images of inside the abdomen. Children with BWS should get abdominal ultrasounds every 3 to 4 months until they reach the age of 10. We also recommend a blood test to measure alpha-fetoprotein (AFP) every 6 to 12 weeks until at least 4 years old. The level of these proteins can also be an indication of cancer.
Why choose us for treatment of Beckwith-Wiedemann syndrome?
Experts at the Surgical Oncology Program at Children's Hospital Colorado have experience managing all types of BWS-related tumors. We work with the Department of Pediatric Urology, Center for Cancer and Blood Disorders and Center for Children's Surgery to form a multidisciplinary team that can address the unique variations of your child’s BWS.
Within each department, we also have specialty programs and clinics like the Urologic Tumor Program and Adolescent and Young Adult Cancer Care Program. These programs were designed for specific forms of cancer, many of which are associated with BWS.
From diagnosis and cancer screening to cancer treatment, we're committed to your child and family. We'll work with specialists throughout the hospital to develop the most effective and comprehensive care plan based on your child's specific needs.