Beckwith-Wiedemann Syndrome is growth disorder syndrome that can cause physical differences and increase your child’s risk for developing certain childhood cancers. While BWS can’t be cured, there are many medical treatments to correct physical differences and to treat medical conditions.
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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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:
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.
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Researchers link BWS to changes in the chromosome that regulates growth. Approximately 80% of children born with BWS don’t have a family history of BWS. Studies show 10% to 15% of children have a family history of Beckwith-Wiedemann Syndrome, meaning one parent has passed on genetic changes that drive BWS.
Children with BWS may have the following medical conditions:
Overall, children with BWS have a 7.5% chance of developing cancer between birth and age 8. Here are cancers your child might develop:
Healthcare providers can do genetic examinations and tests to assess your child’s risk for developing certain cancers. If your child has a suspected or confirmed BWS diagnosis, your provider will work with you on a screening plan. That plan may include regular blood tests and abdominal ultrasounds.
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Healthcare providers diagnose BWS by evaluating your child’s physical differences and medical conditions. They may recommend genetic testing to confirm the preliminary diagnosis. Providers also use genetic test results to understand your child’s individual situation so they can tailor your child’s treatment accordingly.
Genetic test results can help providers tailor your child’s treatment to their individual need.
While pre-natal ultrasounds may reveal some signs of medical conditions that might be linked to BWS, healthcare providers usually can’t diagnose BWS before your child is born.
Yes, if your ultrasounds reveal potential signs of BWS, healthcare providers use amniocentesis and chorionic villus sampling to detect potential BWS before your child is born. Pre-natal genetic testing is a personal decision. Your provider or a genetic counselor will discuss the tests’ potential risks and benefits and answer your questions about the tests’ processes. You have final say about going forward with pre-natal genetic tests for BWS.
Healthcare providers can treat most BWS symptoms. For example:
Unfortunately, there’s no sure way to prevent most incidences of BWS. Approximately 80% of children born with BWS don’t have family members who have the syndrome. Researchers believe most of those cases happen at random and stem from changes in your child’s cells during your pregnancy.
Beckwith-Wiedemann Spectrum is a complex syndrome that can affect your child in different ways and at different times as they grow from infancy until age 8.
For example, if your child has omphalocele, where their internal organs grow outside their stomach, healthcare providers may recommend you delay taking your newborn child home until they have surgery. On the other hand, children who have hemihyperplasia, which causes one part or side of their body to be larger than the other side, may outgrow the physical difference.
All children with BWS have more risk for developing childhood cancers and will need regular checkups and tests so providers can find and treat cancer before it spreads.
Regardless of your child’s specific needs, your healthcare provider will recommend medical treatment and other steps to help you manage your child’s BWS symptoms.
While Beckwith-Wiedemann Syndrome can affect different children in different ways, there are a few medical conditions that may affect most children who have BWS:
You’ll work with a team of healthcare providers who’ll treat your child’s specific BWS conditions and manage regular screening tests. Ask your child’s provider about symptoms that might be signs of new or worsening BWS conditions.
Beckwith-Wiedemann Spectrum refers to a wide range of medical conditions. You’ll have a lot of information to take in. Here are some questions to help you begin:
A note from Cleveland Clinic
You may have known before your child was born that they had Beckwith-Wiedemann Syndrome. Or your child might have been diagnosed at birth. Regardless of when you knew, it may have come as a shock leaving you with lots of questions about what this means for your child. BWS can’t be cured. But medical treatments and other care can help resolve most of BWS’ symptoms. Ask your healthcare provider what medical challenges you and your child may face. They’ll have insight into your child’s specific situation so you understand how BWS may affect your child and what you can do to help your child to thrive.
Last reviewed on 10/26/2021.
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Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Policy