When Your Child Has Sturge-Weber Syndrome (SWS)
Sturge-Weber syndrome (SWS) causes a pink or purple birthmark called a port-wine stain on the face. Abnormal blood vessels form on the surface of the brain on the same side as the port-wine stain. This can lead to complications, such as seizures, increased pressure in the eye (glaucoma), or developmental delay. Since it is caused by a spontaneous gene mutation and is not hereditary, recurrence is not expected. Your child’s healthcare provider will tell you more about your child’s condition and treatment options choices for your child.
What are the causes of SWS?
SWS is present at birth (congenital). There is no known cause. It can happen by chance in any child.
What are the symptoms of SWS?
Symptoms usually appear in early infancy. These can include:
Port-wine stain on the face, usually over the forehead and one eye
Convulsions or seizures
Muscle weakness in the affected side of the body (hemiparesis)
Problems with learning, reasoning, behavior (developmental delay)
Increased pressure in the eye (glaucoma)
Patients with SWS are also at increased risk for migraines
How Is SWS diagnosed?
The appearance of the port-wine stain is often the first clue that your child may have SWS. Your child will likely see a pediatric neurologist for diagnosis and treatment. This is a healthcare provider who specializes in neurologic problems. He or she may perform the following:
Neurologic exam to check how well your child’s nervous system is working. During the exam, the healthcare provider checks your child’s muscle strength, balance, coordination, and reflexes. He or she also checks skills such as thinking, memory, vision, or hearing.
Ophthalmologic exam to check for glaucoma. During the exam, the healthcare provider will measure the pressure inside your child’s eye. Your child will likely need exams often, depending on the initial findings. Children with normal pressure are screened yearly for the development of glaucoma.
Imaging tests, such an MRI or CT scan, to show detailed pictures of the brain and check for abnormal blood vessels.
How is SWS treated?
Treatment for SWS varies depending on your child’s symptoms. Possible treatments include:
Cosmetic or laser surgery to tighten or remove the birthmark.
Surgery to treat complications, such as medicine-resistant seizures or glaucoma.
Medicines to treat seizures or glaucoma.
Special education to help manage symptoms of developmental delay.
Supportive care, such as speech, physical, or occupational therapy.
What are the long-term concerns?
SWS is a lifelong condition. But your child can learn ways to manage symptoms and be as active and independent as possible. Regular visits to the healthcare provider are recommended to check your child’s health and to perform routine testing. If your child has seizures or glaucoma, medicines may need to be taken daily.
Coping with your child’s condition
A positive outlook helps while supporting your child. Encourage your child to be active and to try new things. Consider counseling, which can help you and your child deal with any worries or concerns. And seek help from friends, community resources, and support groups. The more you learn about your child’s condition and its treatments, the more in control you may feel. For more information about SWS, start by contacting The Sturge-Weber Foundation at www.sturge-weber.org.