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What is Craniosynostosis?

Types of Craniosynostosis

Cranio FAQs

Associated Syndromes

Positional Plagiocephaly

Surgery Types

Operative Procedure

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Frequently Asked Questions

 

What is Craniosynostosis?

  • 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.

"I think there is something wrong with my child’s head, Does he have Craniosynostosis, and what should I do?"

  • Mothers have amazing foresight and intuition which mandy medical professionals don't always give credit for. If your gut feeling is saying something isn’t right, discuss this immediately with your paediatrician, and have a referral to a specialist who can assist you.

How would Craniosynostosis be diagnosed?

The diagnosis would typically come from a Neurologist / Plastic Surgeon or Craniofacial Specialist. Normally diagnosis could be made once CT Scans or MRI’s have been performed, however could also be diagnosed upon physical assessment dependent on severity.

Why MRI’s and CT Scans? Why not a simply an x-ray?

An X-rays will only show if sutures are present, they will not show the structural clarity needed to see if the fusion of the sutures has taken place. Only a specialist surgeon with Craniofacial speciality should be allowed to diagnose or dismiss craniosynostosis.

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.

My child has been diagnosed with Craniosynostosis – Now what?

Currently the only treatment option available in South Africa to assist with Craniosynstosis would be Surgery. This would depend on severity and would be confirmed as an option by your specialist.

Mild cases of craniosynostosis are monitored and may never need surgery. However, Craniosynostosis is a progressive deformity (which means the awkward head shape will only get worse as the suture continues to fuse and the brain continues to grow.)

Surgery on your child is a very scary concept but, honestly, these children bounce back fast. Some children only need one initial surgery while other children could require more. It all depends on the severity of the suture fusion and how your child grows.

How can you fix a child with Craniosynostosis?

Parents that suspect something wrong with their child's head shape should consult with a paediatric craniofacial surgeon and/or paediatric neurosurgeon. The main purpose for surgery is to open up the skull to allow proper skull growth as well as to correct the shape of the skull. As more of our children are affected with Craniosynostosis research is being done on the impact fused sutures might have on brain function. Some of our children might have cognitive delays while others will grow up with no affects from the synostosis and surgery. This is a scary time for parents of children with craniosynostosis. It opens up a whole roller coaster of emotions.

Do you feel over whelmed and Emotional?

It is completely normal to feel this way, you may even be scared, as you have to now deal with a flood of emotions, and huge decisions for your child future need to be made.

Everyone is different so each individual will go through this process dealing with different emotions, as long as you know YOU ARE NOT ALONE. Many other parents have been through this very same Cranio Journey you are about to embark on, they are there for you to talk to and to answer your questions, that is why this website was created.

In addition, we need to be thankful for Social Media, there are so many useful reference sites and support groups you can refer to.

Why do I feel Alone?

When a child is born with any health problem it becomes a highly stressful and scary for the Parents. It may feel like no one else in the World could possibly relate to what your family is experiencing. Rest assured that you are far from alone. There are many Cranio families out there.

How Do I know I am with the right Surgeon?

For most families facing this Cranio Journey, your post-surgery consults and follow ups will lead right through to adolescence.

You need to ensure the surgeon is the best fit for your child’s needs.

Surgery decisions should not be made on cost options available, as appeals can be made to Medical Aids and this is your child’s future. You will find if you ask opinions many of us have our favourite craniofacial teams and tend to be biased after years of having them be part of our families.

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.

What would the CT scan look like if Craniosynostosis is present?

Normocephaly
(Skull with no Craniosynostosis)
 
Metopic Craniosynostosis
  
Saggital Craniosynostosis
 
Unilateral Coronal & Bicoronal Craniosynostosis
 
Lambdoid Craniosynostosis
(back of the skull shown)
Cloverleaf (kleeblattschadel) Craniosynostosis
   

 
 
Surgery stories
    

Cameron Rondi
Cameron Mark Rondi was born on the 10th of March at Olivedale Hospital. When he was born he was diagnosed with Craniosynosis, it was picked up at birth as he was born with facial distortion ...

read more >>

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Blake Campbell
Blakes surgery day was 4 April 2006...

read more >>

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Azia-lynn
(not so) little Azia-lynn is born 1 week early (on her original due date!) 8lb 15oz and 21 inches...

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Tiaan Heyns
Tiaan was diagnosed with Sagittal Synostosis at six weeks of age.

read more >>

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Chris-Lee - Our Miracle Child
In January 2007 after several tests and treatment – I was told that I will not be able to have children. 

read more >>

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Claire Badden

read more >>

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For more information or support, please contact Robyn Rondi on - robyn.rondi@hotmail.com  or  082 601 8585