Van der Woude Syndrome
- What is van der Woude syndrome?
- How much experience do you have treating van der Woude?
- Who gets van der Woude syndrome?
- What does a baby with van der Woude syndrome look like?
- How is van der Woude syndrome treated?
What is van der Woude syndrome?
Van der Woude syndrome 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.
How much experience do you have treating van der Woude?
We have taken care of many children with van der Woude syndrome. Right now we are treating four children who have 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. Right now we are treating 639 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 an average of 300 surgeries on cleft lip and palate.
Who gets van der Woude syndrome?
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.
What does a baby with van der Woude syndrome look like?
It depends on what aspects of van der Woude syndrome they are born with.
If they are born without lip pits or mounds, children with VWS look just like children with cleft lip and palate. The pits and mounds are different sizes in different children so they can be almost unnoticeable or quite apparent. The pits can contain saliva glands so they often look moist.
Otherwise, children with VWS look entirely normal.
How is van der Woude syndrome treated?
The treatment of clefts in children with VWS syndrome is identical to treatment of other forms of cleft lip and palate.
We repair cleft lip at 3 to 4 months of age and cleft palate at 9 to 12 months of age. If a child with VWS is born with lip pits they may be removed at the time of one of these surgeries or later, based on the child's needs.