Abnormal Head Shape and Skull Deformity
Plagiocephaly, Craniosynostosis, Genetic Syndromes
Babies who develop an abnormal head shape should be evaluated early in infancy to determine if the cause is plagiocephaly -- the medical term for flat spots due to pressure -- or a more serious condition such as craniosynostosis, which occurs when the skull bones don't fuse normally. At Duke Children’s, our experts evaluate your child to determine the cause of their abnormal head shape and the extent of treatment needed. We work with you and your child to minimize the impact of an abnormal head shape on their physical and developmental growth.
Understanding Plagiocephaly and Craniosynostosis
Babies are born with soft skulls that can develop flat spots when they spend too much time in one position. The flat spots are called deformational plagiocephaly and are the most common cause of abnormal head shape in infants. Plagiocephaly usually develops gradually over the first few months of life but can also develop in the womb. It can occur in twin pregnancies or if a child is born with a congenital stiff neck.
Plagiocephaly is primarily treated with repositioning exercises and possibly therapy. Helmet therapy may be prescribed for severe cases. Surgery is not necessary to correct deformational plagiocephaly, and this condition does not affect how your child’s brain develops. However, the earlier you seek evaluation of your child’s condition, the easier it is to reshape the soft bones of his or her skull.
Craniosynostosis is very different from plagiocephaly. Craniosynostosis is a birth defect that occurs when the bone plates in the skull fuse earlier than usual. As a result, the skull can no longer grow larger normally. Instead, the skull compensates by growing in other directions, which results in an abnormal head shape. The exact shape depends on which parts of the skull are affected. The head could be long and narrow, pointy in the front, tall and round, or flat in specific spots. Craniosynostosis can increase pressure on your child’s brain. Surgical treatment is often necessary.
If your child is diagnosed with craniosynostosis, genetic testing may be recommended to determine whether your child’s head shape abnormality is the result of a rare genetic disease such as Apert, Crouzon, or Pfeiffer syndromes.
Your Child Is in Good Hands
You can be confident in our team’s extensive experience in treating children with craniosynostosis. Families from across North Carolina and surrounding states come to us for their children’s care.
- You’ll work with a team of pediatric experts. In addition to pediatric plastic surgeons and neurosurgeons, your child may be seen by our pediatric ophthalmologists; ear, nose, and throat doctors; oral surgeons; and orthodontists. Your child’s medical team may also include radiologists, pediatric anesthesiologists, genetic counselors, and therapists, as well as intensive care doctors and nurses who take care of your baby immediately after surgery.
- We follow your child’s progress. We will continue to see your child annually for the first five years following surgery to ensure he or she has normal skull growth and brain development. If your child shows any delays in development, our expert team of pediatric neurologists, physical and occupational therapists, and speech pathologists can help your child overcome those delays.
- Duke Children's is one of only seven hospitals in the U.S. verified as a level I children's surgery center by the American College of Surgeons. This Level I designation recognizes our commitment to providing the safest and highest-quality surgical care to our young patients.
Family and Support Services
We understand the emotional impact a major head-shape abnormality like craniosynostosis can have on your family, so we offer special services to help you through it. You can depend on knowledgeable, compassionate experts at your side.
- Child Life team. Whether it's explaining a procedure, offering encouragement, or showing you a photo album of other children who have successfully come through surgery for a head-shape abnormality, you and your child get care in a welcoming, kid-friendly environment. And, you and your family can get emotional support and education to help you cope as your child goes through surgery and recovery.
- Care coordination and support. It’s helpful to have a team on your side to help you manage your child’s care. Our care coordinators and social workers help you navigate the medical system and coordinate the variety of health services your child needs. They can help you work with insurance providers, connect you with resources, and help you manage the details related to your child’s care. Our nurse coordinators can help you schedule appointments for tests, treatments, and other medical visits.
- Ronald McDonald House Family Room. Enjoy a comfortable place to relax at the hospital. You can grab a light meal, shower, do laundry, or use a computer with internet access. Staffed by volunteers, the family room is here to make your time at the hospital a little more comfortable.
ABNORMAL HEAD SHAPE AND SKULL DEFORMITY
Performed on babies of six months or younger, when the bones of the head are still soft and flexible. Working together, pediatric neurosurgeons and plastic surgeons use small incisions, an endoscopic camera, and small instruments to remove the fused suture that may prevent your baby’s skull from growing normally. Following surgery, your baby will be fitted with a helmet that he or she will wear for one year to mold the head back into a normal shape.
May be recommended for babies who are six months or older. At this age, the skull bones are too thick to do the endoscopic procedure, and larger incisions are needed to open the scalp and directly reshape the bones of the skull.
ABNORMAL HEAD SHAPE AND SKULL DEFORMITY
Treatment of Apert, Crouzon, and Pfeiffer Syndromes
Children with Apert, Crouzon, Pfeiffer, or other genetic syndromes may have an abnormal growth in other parts of their facial skeleton in addition to fused skull bones. Treatment of abnormalities associated with these syndromes may require several staged operations. Pediatric plastic surgeons, neurosurgeons, otolaryngologists, and oral surgeons all may be involved in the series of operations needed to restore a normal shape to your child’s skull and face as he or she grows. We help you understand which treatments we recommend and coordinate your child’s care through the Duke Cleft and Craniofacial Center.