What is Apert Syndrome?

Apert Syndrome is a rare genetic birth disorder that causes the bones in an infant’s head, face, hands and feet to fuse together abnormally. Babies born with Apert Syndrome often have no family history of the disorder. Their genetic defect is random, but individuals with Apert Syndrome can also pass the disorder on to their children.

The symptoms of Apert Syndrome are related to a group of conditions that cause the bones in an infant's skull, face, hands and feet to fuse abnormally. These conditions include:

  • Syndromic craniosynostosis: Most often, babies with Apert Syndrome have multiple sutures that fuse together too early. Craniosynostosis can put pressure on your child’s growing brain, possibly leading to problems with development.
  • Midfacial hypoplasia: Apert Syndrome can cause the bones of the jaw, cheeks, eyes and ears to grow abnormally. This may cause issues with vision, hearing and breathing. Babies with midfacial hypoplasia are usually identified by their bulging eyes and underbite.
  • Syndactyly: Some children with Apert syndrome have webbed fingers and toes. The highly trained pediatric hand surgeons at St. Louis Children's Hospital are experienced treating syndactyly.

The multidisciplinary team of surgeons at St. Louis Children's Hospital has extensive experience treating the full range of conditions related to Apert Syndrome. Please call 800.678.5437 or email St. Louis Children's Hospital for more information.

How is Apert Syndrome diagnosed?

Our doctors start with a physical exam of your baby’s skull and facial features. We also take a quick, painless imaging scan, such as an X-ray or CT scan, to look at the bones in your infant’s skull, hands and feet to see if the bones have fused abnormally. If our doctors think Apert Syndrome is a possibility, we will order a simple genetic test aid to help our diagnosis.

We know that you don’t want to be kept waiting to learn if your baby has Apert Syndrome. Whenever possible, we perform tests, make a diagnosis and give you a clear treatment plan at your first appointment.

If your baby is showing symptoms of Apert Syndrome or has been diagnosed with the condition, please call 800.678.5437 or email St. Louis Children's Hospital.

How is Apert Syndrome treated?

When a baby with Apert Syndrome is treated early, the skilled surgeons at St. Louis Children's Hospital can help avoid issues with brain development and improve the baby’s appearance with safe and effective surgery. We bring together all the experts your child may need for ongoing care from specialty areas including:

We offer two options for craniosynostosis surgery:

  • Endoscopic craniosynostosis repair. This minimally invasive procedure uses a small scope and leaves only small scars. After endoscopic craniosynostosis repair, your child will need to wear a helmet for several months.
  • Open craniosynostosis repair surgery. This classic surgical approach can be performed on children of any age. It involves a larger incision plus the use of plates to hold the bones in place. Our surgeons have performed thousands of open craniosynostosis repairs over more than 35 years.

For more information about the treatment of Apert Syndrome and its symptoms, please call 800.678.5437 or email St. Louis Children's Hospital.