Some babies are born with craniofacial syndromes that affect how the face and skull form during pregnancy. Our experienced team provides coordinated, expert care to support your child’s health and development over time.

In many craniofacial syndromes, the bones of the skull join too early, causing changes in head shape — a condition called craniosynostosis. These syndromes often include a pattern of physical features that occur together. For example, babies with Crouzon syndrome may have a shorter-shaped skull, wide-set eyes and a smaller jaw. 

Some kids with these syndromes also have other health issues, such as difficulty breathing, hearing loss and developmental delays.

At Children’s Hospital, our team specializes in caring for babies with various craniofacial syndromes. Our pediatric plastic surgeons offer advanced surgical options to address these differences and improve your child’s quality of life. You’ll also receive ongoing care from a team of specialists as your child’s needs change over time.

Causes of Craniofacial Syndromes

Several craniofacial syndromes are caused by changes, or mutations, in specific genes that babies can inherit from their parents. For example, mutations in the gene FGFR2 can cause Crouzon and other craniofacial syndromes. However, sometimes these syndromes can occur in babies without a family history.

When to Seek Care for Craniofacial Syndromes

During a prenatal ultrasound, your OB/GYN may see that your baby has facial differences associated with a craniofacial syndrome. Or your baby may be diagnosed after they are born. 

Your OB/GYN, maternal fetal medicine specialist, neonatologist (newborn intensive care specialist) or pediatrician can refer you to us. Or you can reach out to the plastic surgery nurse directly.

Types and Symptoms of Craniofacial Syndromes

Our team provides surgery and other treatments for all types of pediatric craniofacial syndromes, including rare conditions.

Crouzon Syndrome

Symptoms of Crouzon syndrome include:

  • Irregular skull shape, caused by fused skull bones (craniosynostosis)
  • Less developed or smaller central face
  • Wide-set eyes
  • Beaked nose
  • Small upper jaw
  • Hearing loss

Apert Syndrome

Apert syndrome is like Crouzon syndrome but also affects the hands, feet and neurological development. Symptoms of Apert syndrome include:

  • Irregular skull shape
  • Sunken area in the middle of the face
  • Wide-set eyes
  • Beaked nose
  • Small upper jaw
  • Fused (“webbed”) hands and feet (syndactyly)
  • Developmental delays
  • Hearing loss
  • Cleft palate

Pfeiffer Syndrome

Symptoms of Pfeiffer syndrome include:

  • Irregular skull shape
  • Sunken area in the middle of the face
  • Wide-set eyes
  • Beaked nose
  • Small upper jaw
  • Fused (“webbed”) fingers (syndactyly)
  • Broad thumbs and big toes
  • Other bone and joint issues
  • Narrowed airway (trachea)
  • Developmental delays

Other Craniofacial Syndromes

Our team also cares for kids with other craniofacial syndromes, including:

While the symptoms associated with these syndromes usually don’t cause pain for your baby, they can be serious. For example, craniosynostosis can increase pressure on the brain and affect your baby’s development. Other symptoms can affect their breathing and feeding.

How We Treat Pediatric Craniofacial Syndromes

If your baby was born with a craniofacial syndrome, they may need surgery as a newborn and later in childhood and adolescence. At Children’s Hospital, we offer the latest procedures to correct congenital differences based on your child’s specific needs.

Skull Surgery

For almost all kids with craniofacial syndromes, surgery is the best way to treat their irregular skull shape caused by craniosynostosis. The timing of the surgery will depend on your child’s symptoms. We offer:

  • Endoscopic strip craniectomy: A minimally invasive procedure to remove a strip of skull bone through small incisions. This relieves pressure on your baby’s brain. After surgery, your child will wear a custom-made molding helmet, which reshapes the skull, for up to one year.
  • Cranial vault remodeling: Reshapes your baby’s skull, so their brain has room to grow. This complex surgery is performed by a plastic surgeon and neurosurgeon. Unlike endoscopic strip craniectomy, remodeling surgery does not require your child to wear a helmet afterwards.

As part of your follow-up care, you’ll meet regularly with our team so we can monitor your child’s growth. These visits may involve CTs or other tests to check for early signs of developmental issues.

Jaw Surgery

If your newborn has difficulty breathing or feeding, we may recommend surgery to lengthen their jaw. With an advanced surgery called mandibular distraction, we can lengthen the jawbone with a special device. Performing jaw surgery soon after birth can help prevent the need for a temporary airway (tracheostomy).

Hand Surgery

To correct fused fingers (syndactyly) that occur with some craniofacial syndromes, our hand surgeons can separate fingers during a procedure. They may also take skin tissue (grafts) from your baby’s lower abdomen to cover the separated fingers. 

Because craniofacial syndromes affect kids differently, we’ll personalize hand surgery to your child’s needs. Your child may need more than one surgery as they grow.

Other Specialty Surgeries

Our expert surgeons can also correct other issues associated with craniofacial syndromes. We offer: 

  • Cheekbone and eyelid surgery
  • Cleft palate repair
  • Ear reconstructions for missing or underdeveloped ears (microtia)

Care for Developmental Delays

If your child experiences developmental delays associated with a craniofacial syndrome, our coordinator can connect you with other resources in our academic health system, including: 

  • Developmental pediatricians: Treat growth-related or behavioral concerns.
  • Neuropsychologists: Can assess your child’s needs and help coordinate other therapies your child may benefit from.
  • Social workers: Can help your child access support at school. 

Because we are part of an academic health system, we have specialists in over 30 pediatric specialties available to assist your family.

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