Chromosomal and Genetic Conditions

Van der Woude Syndrome

What Is Van der Woude Syndrome?

Van der Woude syndrome (VWS) is an inherited form of cleft lip and palate. A syndrome is a disease or disorder that has more than one identifying feature or symptom.

Patients with van der Woude syndrome are born with pits or mounds of tissue in the lower lip, cleft lip, cleft palate (an opening in the roof of the mouth) or cleft lip and palate. The pits, mounds and clefts can occur alone or in any combination.

Van der Woude Syndrome in Children

VWS affects one of 40,000 to 100,000 infants.

Many cases of VWS are caused by mutations in a gene called interferon regulatory factor 6, IRF6.

Van der Woude syndrome is an autosomal dominant condition, meaning that only one parent needs to have an abnormal gene for the child to inherit the disease.

A person with van der Woude syndrome has a 50% chance for each pregnancy of passing this mutation on to the child.

Although VWS is a genetic condition, the parents of many children born with VWS do not have VWS themselves. The mutation can occur in any child at the time of conception.

We do not know why this happens but it is not because of anything that the parents do or don't do during pregnancy.

Van der Woude Syndrome at Seattle Children's

We have taken care of many children with van der Woude syndrome. Over the past five years, we have treated 13 children with VWS.

The treatment of clefts in children with VWS is identical to treatment of other forms of cleft lip and palate, which is the most common problem we treat. Over the past five years, we have treated more than 1,300 children with cleft lip and/or palate.

Each year, we have almost 200 children come to our Center for treatment for the first time. Each year, we perform more than 300 surgeries on cleft lip and palate.