Van der Woude Syndrome

What Is Van der Woude Syndrome?

Most children born with van der Woude syndrome have inherited it from one of the parents.

Children with van der Woude syndrome have pits or mounds of tissue in the lower lip, cleft lip, cleft palate, or both a cleft lip and cleft palate. It is possible to have only one of these symptoms, or the child can have all or any combination of them.

Even if van der Woude is an inherited syndrome in your family, whenever a baby is born with a birth defect, it is normal for the parents to feel overwhelmed and to have many questions about the treatment and prognosis. We understand it is never easy to have your child go through surgical treatment.

At the Yale Craniofacial Program, our internationally recognized team of surgeons and cross-disciplinary specialists work together to provide top-level quality care for your child while offering the utmost concern and support for your family.

Causes of Van der Woude Syndrome

Van der Woude syndrome is an autosomal dominant condition, meaning that only one parent needs to have an abnormal gene for the child to have a 50 percent chance of inheriting the condition.

If neither parent has van der Woude syndrome, it may be troubling as to why your child has the syndrome. Often, parents can feel guilty when a child is born with a birth defect, wondering if there was something that could have been prevented during the pregnancy. Research shows no link between what happens during the pregnancy and the cause of the genetic mutation that leads to van der Woude. The mutation can occur in any child at the time of conception for reasons not yet fully understood.

It is natural to wonder if you will have another child with van der Woude. If either of the parents has van der Woude, there is a 50 percent chance that you will pass the syndrome on to another child. If, however, your child has van der Woude as a genetic mutation without inheritance, your chance of having another child with the syndrome is 1 in 40,000 to 1 in 100,000.

It is also natural to wonder if your child will have children with van der Woude. Your child has a 50 percent chance for each pregnancy of having a child with van der Woude.

Symptoms of Van der Woude Syndrome

Your baby may be born with varying degrees of van der Woude syndrome. Sometimes, the lip pits or mounds may not be noticeable and sometimes they are very apparent.

Your child might have been born with a cleft lip and cleft palate that was not apparent in a prenatal ultrasound. A cleft lip and palate is generally found during the first exam after your baby is born. However, if your child was born with just cleft palate, it might not be noticeable upon a first examination, especially if the soft tissue of the palate formed correctly. Often, cleft palate is suspected if the baby has trouble feeding or breathing.

If no pits or mounds are present, genetic testing can be done to determine if the clefting is a part of a syndrome, such as van der Woude.

The pits or mounds of van der Woude can contain saliva glands and therefore they can appear moist. Otherwise, children with the syndrome can look normal.

Using 3D CT imaging, we can provide a diagnosis more quickly and with more accuracy than ever before. Traditional CT scans provide black and white, one-dimensional scans, while advanced 3D imaging technology provides colored, multidimensional images that allow us to see the specific characteristics of your child’s craniofacial differences. In this way, we can better understand how your child’s birth defect will specifically impact his or her health and development.

This should be used as a guideline. Not every symptom is included. If your child has one or more of these symptoms, it does not mean that he or she has van der Woude. If you are concerned that your child might have van der Woude, please make an appointment with your child's doctor.

Treatments for Van der Woude Syndrome

Because van der Woude is a syndrome that produces cleft lip and cleft palate, the treatment is identical to other forms of cleft lip and palate.

During the planning stage, we use the most advanced 3D imaging techniques for a complete understanding of your child’s specific condition and how your child’s soft and bony tissues are affected. By gathering accurate data about your child’s craniofacial differences, we can:
  • Simulate the outcome of proposed surgical plans and adjust any discrepancies before surgery
  • Follow and monitor your child’s condition during the post-surgical healing process
  • Monitor your child’s long-term development
Because the degree of van der Woude syndrome varies from child to child, our surgical team of top medical professionals will create a highly customized treatment plan for your child, with a focus on improving his or her physical and emotional well-being, as well as his or her development.