Frequently Asked Questions

• Your baby’s skull is made up of five bones held together by fibrous material called sutures.
• Normally, these remain open as long as the brain is growing.
• This allows the brain room to grow in all directions.
• Craniosynostosis, or closure of these sutures, occur when the bones in your baby’s skull fuse together before the brain has stopped growing.
• This can happen before your baby is born or in the first few months of life.
• If even one suture closes before it is suppose to, the brain will grow in the direction of least resistance, resulting in a misshapen skull or face.
• Some cases of Craniosynostosis can be attributed to Invetro constraint , or chromosomal defects.

What causes craniosynostosis?

• In the majority of cases of single suture craniosynostosis, it is an isolated incident and the cause is unknown.
• There are, however, some syndromes that include craniosynostosis as a common trait.
• The percentage of cases of cranio that occur as part of a syndrome is about 20%.
• Other possible causes include restraint of head growth in the womb.

What Are The Symptoms of Craniosynostosis?

• Most children with Craniosynostosis do not have any symptoms; the head shape is abnormal, and the face may be malformed in certain cases.

A LIST OF COMMON WORDS WHEN DEALING WITH CRANIOSYNOSTOSIS DYAGNOSIS

Sagittal (Scaphocephaly)

• The most common, results in a long and narrow shaped head with possible bulging prominent forehead, and sometimes the back side has a “pointy” knob or “keel” shape.

Coronal (Plagiocephaly)-

• Fairly common, results in flattening of the forehead over the affected eye, the opposite eye not uncommonly looks to be narrowed from the forehead bulging out and over the eye. The eye can also end up not on a level line with one eye higher then the other (called orbital dystopia).

Metopic (Trigonocephaly)

• Less common, results in a triangular shape to the forehead when viewed from the top.
• Forehead is narrow and there can be a “pinched” look to the eyebrows and forehead.
• The backside of the head is much wider then normal.
• The closure of this suture prematurely does not always mean there is a problem, it depends on the degree of asymmetry and how severely affected the child becomes.

Lambdoid (Posterior Plagiocephaly)

• Most rare, results in bulging over the affected suture with typically the ear on the affected side pulled up and backwards toward the suture.
• Lambdoid gives a flattening to the backside of the head.

Positional Plagiocephaly

• A more common problem in recent years is the flattening of the back- side of the head not associated with a true synostosis.
• This has become a problem since the introduction of putting babies on their backs to prevent Sudden Infant Death Syndrome.

Craniofacial Syndromes

• There are a number of craniofacial syndromes that include Craniosynostosis.
• Some of the most common include Crouzon, Apert, Pfeiffer, Saethre-Chotzen, and Kleeblatschadel.
• Each syndrome has problems with skull growth along with a number of other potential developmental abnormalities.

If I have another child, will he/she have craniosynostosis too?

• If the cranio has been diagnosed as an isolated incident (not part of a syndrome and with no genetic history) then the chances of another child having it are very slim, approximately 4%.
• If it was part of either Apert or Crouzon syndrome, the chances are about 50% that another child will have Cranio as well.

My child was just diagnosed with Craniosynostosis—What do we do now?

• You would be experiencing normal emotions the likes of Confusion, Upset, Angry, Sad asking yourself questions like, How did I cause this, what could I have done to prevent this, you will more than likely be asking yourself why you were given a child that has a condition that you know nothing about.
• You are not alone.
• Understand what the condition is and proceed to understand how this will affect your child.
• Attain as much education and options available to you with regards to Craniosynostosis as you can.

How is Craniosynostosis treated?

• Treatment is aimed to restore the skull and face to a normal shape. While the deformity may vary in severity, the psychological effects can cause self-esteem.
• The child must also be evaluated for any signs of increased cranial pressure due to restricted skull growth.
• The type and timing of surgery varies from child to child, the diagnosis, and the preference of the surgeon.

At what age is surgery normally performed?

• Depending on your surgeon, some surgeons will suggest in the first 2 weeks
• The norm is at the age of 3 months of age, but depending on synostosis.
• For multiple fusions, surgery of the remaining sutures is normally done at six months.

Who normally performs the surgery?

• Even though there are many surgical options available, depending on the type of synostosis, the most common surgical procedure is generally performed by a plastic surgeon in conjunction with a neurosurgeon.

Why Are Both A Plastic Surgeon And Neurosurgeon Involved In The Child's Care?

• The plastic surgeon reconstructs the facial deformity and the neurosurgeon is primarily involved with the cranial deformity.
• The combined expertise of the plastic surgeon and neurosurgeon yields optimal results.

What do they do in the procedure?

• It consists of releasing the fused suture and reshaping the skull.
• The surgeons make an incision or opening from one ear to the other ear, across the top of the skull behind the hairline so that afterwards the hair covers the scar.
• After this incision is made, the neurosurgeon removes the affected areas of the skull and forehead.
• The plastic surgeon reshapes these bones and returns them to a normal position.
• Once the procedure is finished, the incision is closed.
• The procedure is extremely reliable and the risks of complications are low.
• Most children go on to lead normal lives with no residual effects of their Craniosynostosis.

What Are The Risks To The Child In This Type Of Surgery?

• For healthy children with no other major medical problems, the risks are minimal.
• The major concern during surgery is blood loss because an infant's blood volume is low and the loss of a small amount may require replacement.

How many procedures are normally performed?

• Most children who have single suture involvement require only one surgical procedure.
• Those with multiple suture involvement and those with Craniofacial abnormalities associated with the Craniosynostosis, multiple procedures are necessary.

There are many different types of surgery, what determines what surgery is necessary?

• The type of surgery is determined by the number of sutures closed and the type of synostosis, the age of the child and what the surgeon's preference will be.

Is There Any Scarring From The Surgery And Will It Be Apparent Later In Life?

• The only visible scar is the scar in the hairline, which is usually covered nicely as the hair grows and the child ages.

What Kind Of Post-Surgical Care Is Needed?

• As a parent, you will need to keep your child's suture line clean.
• This involves removing all crusts with peroxide and antibiotic ointment and shampooing the infant's hair with baby shampoo.

Do The Deformities Cause Other Problems With Ears Or Eyes?

• Children with Craniosynostosis, craniofacial syndromes, and positional deformities may have problems with their eyes and ears.
• Those with Craniosynostosis and positional deformities have trouble with vision as a result of an imbalance of their ocular muscles.
• Children with craniofacial syndromes have problems with their ears and eyes and often have a history of ear abnormalities in conjunction with the bulging of the eyes and corneal exposure problems.
  

Please note this information has not been provided by a medical professional, and should not be used in the place of a medical opinion