Craniosynostosis is a rare disorder that affects the way the bones of your child’s skull join together. If left untreated, it may put pressure on the child’s brain as it grows and will cause his or her head to be misshapen.

Doubtless, it can difficult as a parent to hear that there may be something unusual occurring during your child’s early development. It doesn’t help that many of the words that describe developmental problems are themselves so scary. The good news is that craniosynostosis is very well-understood, and in the hands of an ACPA-approved craniofacial team, normal development can be assured thanks to one of two very reliable procedures.

If identified in the first few months of life, a minimally-invasive procedure may be used to correct the condition. Even if craniosynostosis is NOT identified in those first few months, the problem can be corrected with a more traditional surgical procedure. The results in either case are almost always quite good, allowing normal development of the brain and of the bones of the skull.

In most cases, children who are diagnosed and treated in the first few months of life will need to wear a helmet for the first year of life.

What is Craniosynostosis?

We tend to think of the skull as a single structure of bone—in part because that is true in later life. At birth, however, the skull is actually made up of several sections of bone, connected by strong, elastic tissues called “sutures.” As we age, these tissues “ossify,” fusing together to become bone.

In very rare instances—1 in every 2000 to 3000 babies—the sutures ossify prematurely. Unfortunately, this means that the skull cannot expand to accommodate the rapid growth of your baby’s brain. Deformities of the skull may occur as the child’s body attempts to relieve the resulting pressure.

Craniosynostosis  is usually non-syndromic, which means that there will be no other birth defects affecting the child’s development. In very rare cases, genetic testing performed upon diagnosis may reveal potential complications as a result of one of several known syndromes (Crouzon, Apert, Pfeiffer, Carpenter, etc.).

Diagnosis of Craniosynostosis

It may not be immediately obvious that your child has a problem. Craniosynostosis reveals itself as your baby’s brain begins to grow. This is just one of the many reasons you should be sure to establish a relationship with your pediatrician immediately.

It is recommended that your baby be examined 2 to 4 weeks after birth, then again at 2 months and again at 4 months.

In most cases of craniosynostosis, it is the suture at the top of the child’s head that fuses prematurely. This will cause an abnormal head shape. Sometimes, however, those same abnormalities may be caused by positional molding—a result of the child sleeping many long hours on its back (as is often recommended by pediatricians). This can usually be corrected with physical therapy and/or a helmet.

If there is any doubt at all of the cause, your child should be seen by a craniofacial surgeon.

Minimally Invasive Surgery

Thanks to advances in pediatric medicine, most children with craniosynostosis will receive an early diagnosis. Approximately 75% of the surgeries performed by our team are minimally-invasive, endoscopic surgeries in the first three months of life.

This surgery requires only a very small incision. The required hospital stay after surgery is usually very brief. Beginning two weeks after surgery, your child will need to wear a helmet for about a year.

As parents, your diligent care is absolutely the most important factor in ensuring a good result. The child will need to wear the helmet according to doctor’s orders and be seen regularly by an orthotics specialist in order to maintain the helmet’s proper fit.

Traditional Cranial Vault Surgery

After six months, endoscopic surgery is not recommended.

The traditional surgery to relieve craniosynostosis requires several hours of cranial vault surgery in order to resect and reshape the bones of the skull.  (While mesh and/or screws will be used to hold the bones in place, thanks to yet another miracle of modern science, this “hardware” is most often made of materials that the body can safely absorb.)

Your baby will need to be under general anesthesia during this procedure.

After an extended hospital stay, a second procedure may be required, and so follow-up care is essential to achieving a successful result. While this procedure is “major surgery,” which always risks complications, craniofacial surgeons have been performing it for years with excellent results.

The child will not need to wear a helmet thereafter.

Craniosynostosis and Your Child’s Development

There is something miraculous about birth, about a child’s first months of life, and no one knows that more than the physicians and health care professionals who care for your infant.  Establishing a good relationship with an ACPA-approved craniofacial team will ensure the best possible care and all the support that you, as parents, need in the care of your newborn child.

Craniosynostosis can result in deformity and brain trauma if left untreated.

Once corrected by surgery, however, after a couple of weeks it will be time for your baby to grow up normally. As parents, you will be required to take only the most normal precautions. “Don’t drop her!” “Be careful of his head!” And be sure that the child receives regular checkups in the first years of life.