What is Beckwith-Wiedemann Syndrome (BWS)?
Beckwith-Wiedemann Syndrome (BWS) is a genetic disorder that affects your child’s growth and increases their risk of developing certain childhood cancers.
BWS, which is also called Beckwith-Wiedemann Spectrum, is a relatively rare disorder. Each year an estimated 11,000 children worldwide are born with BWS. This is an estimate because there are people with BWS who don’t have noticeable physical differences. As a result, their parent or parents may not seek the genetic evaluation and possible testing that are key to a formal BWS diagnosis.
While BWS can’t be cured, there are many medical treatments to correct physical differences and to treat medical conditions.
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What is a common characteristic of Beckwith-Wiedemann Syndrome?
Many children who have BWS have physical differences that you and your healthcare provider might notice on prenatal ultrasounds. For the most part, however, you and your healthcare provider will notice your child has BWS characteristics as soon as they are born and/or by age 2. Some of those characteristics are:
- Your child has macroglossia (large tongue). If your child has macroglossia, their tongue might appear as if it is too big for their mouth.
- Your child’s birth weight is above average. Children with BWS are often are above the 95th percentile for weight.
- Your child has pink or red birthmarks on their faces. These birthmarks are sometimes called angel kisses or stork’s bite. Not every child born with a stork bite or angel kiss has BWS.
- Your child has tiny creases in their earlobes or tiny indentations in their outer ear.
Is BWS a developmental disability?
Unless a child has had untreated low blood sugar or other medical complication, there’s no indication that Beckwith-Wiedemann Syndrome affects children’s intellectual ability. Some children who have physical differences such as macroglossia (large tongue) that can affect speech may have some developmental delays.
